Looking at trying mucuna , just wondering if anyone else is med free and using mucina. ?
Mucuna: Looking at trying mucuna , just... - Cure Parkinson's
Mucuna
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ryanJames1
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•
mucuna is a med just another way of getting the same thing. Natural meds are still meds. Just you don't know what or if you are getting to much or too little.
True 
oh well will go with it and let you know how it goes
I was diagnosed year 2010. I dont take meds. Im taking velvet bean 20x (from australia). For more than 2yrs now. Im still ok.
Thank you ordered Australian organic macuna thought I would start with half a teaspoon twice a day as med free at present, but had symptoms since 2013
please tell me the name of the Australian brand
I don't think there was a brand just on EBay as Australian Mucuna Certified Organic, will check label when it arrives and let you know
Thank you
I bought mine from herbosophy.com.au
They have 2kinds of velvet bean. Im taking velvet bean 20x.
Hope this will help.
Thank you so how much do you take mine hasn't arrived yet
2 tabs 30 minutes before breakfast.
2 tabs 30 minutes before lunch
2 tabs 30 minutes before dinner
5hrs apart.
The first time i took it, i take 1 tab first day, 2tab 2nd day. 3 tab 3rd day. Until it reach 6 tab per day.
Okay thank you I have ordered powder so maybe half a teaspoon?
Help...What does 20x mean ? I couldn't find anything about the amt of dopa on the velvet bean container on herbosophy.com. I'm currently on 4 Banyan MP tablets 500mg, 3 to 7 % dopa, and it's not working.
Hi Kerrington
Try adding Mannitol and Thiamine HCL to your routine
I worked as a Manager in Community Health for many years so feel qualified to give a factual evidence based assessment of my health
I have had a reversal of some symtoms since adding mannitol and B1 and I am enjoying a better quality of life overall
They are not a cure and apparently may not work for everyone how ever there seems to be many of us experiencing an overall improvement
Thanks RJ1 ! ! So far I've been on Thiamine HCL 4 gms a day since mid March. It is helped with rigidity, stiffness, intestinal issues, and balance, but not tremors, or energy. ..TOTAL LACK OF IT .....
I've been looking at D3 since 15k the other day and within a few hours had tremendous energy, so far I haven't been able to replicate it : (
Funny you should mention Mannitol tonight because I've been trying to get the lowdown on that too this week ! I decided to try it out !
😊 Definitely worth trying! I have also added D3 and NAC
I have been exercising using an inexpensive vibrating machine for about 6 months this has definitely increased my muscle tone and help s with a reasonably active life
Let me know how you go with the mannitol
Not me but I do have a friend who is now pharmaceutical med free and using Mucuna Puriens. She was originally put on a high dose of meds by neurologist but it brought on violent dyskinesia. She was a math and science teacher and did her own research after being told about Mucuna, went of the pharmaceuticals and thru trial and error finally found the dosage of it that gets her through the day. Has been using Mucuna for over 3 years now.
She continues to inform me of the benefits hoping that I will switch to Mucuna. However, since she is taking the powder (not capsules) in water every 90 minutes I can't bring myself to working with that regimen. I am about 15 years older than her and I am not a scientific thinker so I would not be comfortable with the 'trial and error' period, and finding the right dosage. That "scares" me somewhat. However, the eventual effects of Sinemet CR also scare me.
Hope this is useful to you......BTW I live in BC, Canada.
Hikoi• in reply to
Won't mucuna also lead to dyskensia? I imagine so.
No only with the synthetic forms
Contrary to a common fallacy among the neurology community, L-Dopa by itself does not appear to produce dyskinesia. The major culprit is Carbidopa, which is always paired in PD drugs with L-Dopa to decrease nausea. From a recent paper by Marty Hinz, Alvin Stein and colleagues:
" . . . Carbidopa, whose mechanism of action is B6 depletion, was introduced in 1975. PD mortality increased over 328% between 1976 and 2011.
"Prior to 1976, an era with no carbidopa administration, irreversible dyskinesias were not reported. In 2014, the authors documented that irreversible dyskinesias are caused by carbidopa, not L-dopa. The mechanism of action is a carbidopa-induced B6 RND [Relative Nutritional Deficiency] which compromises the two B6-dependent enzymes, histidine decarboxylase and AADC, which metabolize histidine to histamine. B6 depletion may induce profound carbidopa-induced antihistamine dyskinesias which have been wrongly described as L-dopa-induced dyskinesias in the past. Managing these dyskinesias requires stopping carbidopa and administering adequate B6. If adequate B6 is not administered the dyskinesias may be perceived as permanent and irreversible."
5-HTP dosing gives a safe alternative to Carbidopa for controlling the nausea.
The biochemistry of balancing the neurotransmitters is very complex and beyond the grasp of most. Dr. Hinz et al, in about 20 papers freely available on PubMed have explained the network of connections and have developed a therapy that answers the nutritional imbalances. In contrast to this, the standard drug approach, as well as DBS -- which are blind to the inner chemical dynamics -- perpetrate a tragedy based on ignorance, dull complacency, and a naive trust in the current protocol.
ncbi.nlm.nih.gov/pmc/articl...
You certainly have a good grasp of all, I have only reasonable understanding and for the present my PD symptoms aren't as scary as the med trail but that is only my perspective
My takeaway from all this is "those who steer away from Carbidopa as much as possible will be doing themselves a big favor." Whether through Amino Acid therapy or by taking the green-tea extract EGCg--see recent posts by Silvestrov--there are safe ways to control nausea while getting an adequate dose of L-Dopa at the same time.
Dumplekin are their other studies that support this theory about Carbidoba. These ones by M Heinz are written in support of his protocol which he sells.
Al the research papers I have seen to date are written by Hinz or his colleagues. Hinz has a vested interest in this as he sells the treatment that fixes the problem that he has identified.
A question about the apparently increasing death rate that is used as proof of the dangers of carbidopa. Where it says the death rate it is actually only reporting on the death rate in the USA. So is this a problem everywhere?? NO no, in fact quite the opposite. In a similar time frame the death rate apparently decreased in Other countries. Here are a couple of papers on it.
Trends in mortality from Alzheimer’s disease, Parkinson’s disease and dementia, England and Wales, 1979–2004 concludes that
"Mortality rates of Parkinsons Disease declined by 22 per cent for males and 32 per cent for females!"
webarchive.nationalarchives...
Another report in 2009 titled Does Parkinson’s disease increase mortality? was based on two studies from the UK and four trials from Western Europe. It concluded
"The survival of PD patients is similar to the normal population during the first decade after presentation. This is followed by ‘a modest rise’ beyond 10 years. ‘Even with very long-standing dis- ease and follow-up over more than 20 years there is only a moderate ... increase in mortality .....‘This is reassuring and suggests that current standards of best medical management of PD have indeed significantly improved survival compared with the prelevodopa era.’ "
onlinelibrary.wiley.com/sto...
So if the US has an increasing death rate but other countries have a decline what is the cause of the increase in Parkinson deaths in the US but not elseWhere?
Hikoi,
The death rates from PD reported by Hinz et al in their carefully documented 2014 indictment of Carbidopa (CD),
ncbi.nlm.nih.gov/pmc/articl...
matches up very well with the best U.S. government statistics.
In particular, please compare especially Hinz's Figure 1,
ncbi.nlm.nih.gov/pmc/articl...
with the government statistics, namely Figure 6, p. 9 of the CDC report:
cdc.gov/nchs/data/nvsr/nvsr...
The CDC plot uses semi-logarithmic coordinates: this format suppresses small changes in the vertical coordinate so I could only estimate approximately the PD death rates shown from 1958 to 2011. Inspecting this you will find a MILD DECREASE in PD death rate from 1958 to 1979 (I get roughly 10%); and there was a STRONG INCREASE from 1979 to 2011 (going from 2 deaths per 100,000 pop. to 7 deaths per 100,000). That is, the PD death rate went up 3.5 times or 350%; this agrees closely enough with the change shown in Fig. 1 above, by Hinz et al., who assert a 328% increase. (Whether they mean multiplicative or additive does not matter much.)
So, in short, contrary to your hypothesis, I do not find any "funny business" or "spinning of the data" by the Hinz group to serve themselves.
I cannot tell you why the European data appears contrary to that in the US. We have a pretty thorough knowledge of conditions in the US--including the timeline for introducing Carbidopa into the PD meds. Until we have similar, more complete insight into the situation abroad, it is premature to bring it in. You have raised a good question. Let's hope someone will try to figure this out.
all best, dumpelkin
Afterthought--next day: A few possible differences between USA and Europe might explain their discrepancy in PD mortality:
a) diagnostic criteria,
b) toxins in environment,
c) patient cohort/genetic differences
d) amount of Carbidopa/Benserazide typically used by patients,
e) statistical method used,
e) a combination of all of the above.
In the end, there are so many damned variables at play, one should take the statistics with a huge grain of salt. But what is not controversial and what should raise deep concerns about Carbidopa is the list of its known "side effects and adverse reactions" (from the above Hinz paper)
ncbi.nlm.nih.gov/pmc/articl...
If we put this toxic chemical in our bodies, then we are asking for dire long-term results. It is more sad if we take CD while knowing there is a completely safe alternate protocol to eliminate the nausea, (Unfortunately, it is not cheap.)
😊 now I am bamboozled with figures. It just doesn't convince me though. How is it only Hinz and co are publishing on this. Why does he have general lack of support, he has been around a while now so have you met or talked to others who have used the regime successfully long term?
The table of side effects largely quotes his papers. I would need to do more research to check.
From another site:
Here is a public report written about Hinz and his company that appeared 2011 (Star Tribune) and details some of the companies claims and actions taken by the FDA. Apparently, the FDA had major concerns over the marketing techniques but you should read and decide for yourself:
startribune.com/fda-acts-ag...
PS I think Sweden is the only country in the world that has a national register for PD so over time their stats will be useful.
neuroreg.se/en.html/parkins...
This is the British report from dept of stats.
webarchive.nationalarchives...
There website is here
Medical research is hard. Progress and acceptance can take decades, or longer. According to Kedar N. Prasad Ph.D., a top expert in micronutrition, cures for night blindness and scurvy were known to the ancient Egyptians "as early as 1500 B.C.E." Hundreds of years ago, the native Americans had a cure for scurvy prepared like a tea from the a bark and needles of a pine tree. But it wasn't till the 20th century that western medicine caught up with these ancient protocols and discovered vitamins A and C.
If a cure comes from a source not recognized by the entrenched establishment, then it has a hard, uphill climb. Marty Hinz and his colleagues are M.D.s, but were not trained as neurologists. They are outsiders to that elite guild.
They are not developing a drug that can be patented and marketed by big Pharma to swell its profit margins.
Their treatment has to be custom tailored to the individual patient, and the learning curve for doing so is steep. Most MDs do not have the time or interest to undergo the necessary training.
These are some of the reasons that their treatment will catch on, if at all, only slowly and by word of mouth.
And I am not surprised by the FDA (in the pocket of Big Pharma?) going after Marty Hinz. They go after anybody who promotes supplements as being "intended to diagnose, cure, treat, or prevent any disease." M. Hinz overstepped this regulation. He still sells his supplements but has to be more restrained in his marketing language. Not any kind of evidence that he is a quack. Yes, the FDA has destroyed many "quacks" -- much appreciated, thank you!-- but they have also smashed reputable MDs and medical businesses with little or no warning.
Enuff said. Hinz's protocol must be allowed to stand on its own merits. Does it heal many? Is the science behind it sound? I don't know, but am willing o give it a trial.
P.S. Your startribune link did not work for me. Searched their site in vain using "Marty Hinz and FDA."
startribune.com/fda-acts-ag...
FDA against Duluth firm selling dietary supplements
The company has agreed to change its marketing tactics.
By Jennifer Bjorhus Star Tribune DECEMBER 27, 2011 — 12:03PM
I wonder if this link works for you.
Have you tried the Hinz protocol? I am in the middle of it with an uncertain practitioner.. I got to be over medicated with the D5 powder and only after drawing back on my own do I feel better. It is like I have been left on my own to figure it all out... You?
Hello Tryguy,
I started Hinz's protocol in June 2015 under the guidance of his research colleague Alvin Stein, MD, who definitely knew what he was doing. The protocol worked for me well--was as effective as Sinemet in controlling my tremors --my main symptom--without any nausea.
This May, when Dr. Stein retired, I got transferred to a "well-regarded" practitioner in Wisconsin. So far my only interaction with the latter has been to receive the supplements from his office. No consults, no urine assay. This has not been too bad since my condition is progressing very slowly, if at all.
But, in the mean time, I have gotten lazy about taking my supplements--taking them 1-2 times instead of 4 times per day. As a result, I am "off" most of the time, and my tremor prevails most of the waking hours. Not an ideal situation! I need more discipline. But interrupting oneself every few hours for 10-15 minutes to take the meds gets old pretty fast. Have no complaint so far about the protocol (except I wish it were less pricey, and as easy as popping a few pills.)
Thank you for sharing your experience. I really appreciate it. It seems as though I am going in this alone with guys like you and the Neuro talk forum as my only real guidance. My practitioner too is quick to order but vague in helping me. He is an integrative neurologist, but I think I get more practical information from fellow PD Warriors like yourself. I recently corresponded with Dr. Stein only to find out he was retired. I did not ask him for a referral but still thinking about it.
So far, I do about 20 g a day with Mucuna with 7.5 g twice a day of tyrosine. Of course there is the Cys replete and Neuro replete. I have had two assays that were not close, but a light did go on a couple of days ago. I was almost back to my old self! Did it work that way with you?
I did not have any "aha" moments. The transition from the Sinemet plus Azilect to the Hinz supplements was smooth and uneventful. A bit of nausea the first time I took the Mucuna was a transient event, which passed in a few minutes and did not recur later to any large extent.
When my meds are "on"--from about 1-3 hours after I ingest them, I feel fine. I also think my face is less masklike. Another symptom that has gone away in the last month or two is pellet-like stool/constipation. This last healing item is not due to the Hinz protocol. Nor is it due to the dried prunes and magnesium powder I take, as I formerly surmised on HU. I believe it correlates completely with my adding two tablespoons of ground flaxseed powder to my morning granola.
Dr. Stein passed my records off to the naturopath Chad Oler in Wisconsin. "Doctor Chad" has some excellent neurology tutorials on his website, suggesting that he knows the Hinz protocol in depth. Please see:
As I said, I have not yet had the privilege of consulting with him in person. Have only received the supplements. So, at this point, I cannot yet give a testimonial concerning the quality of his care.
Here is a good article about mucuna being combined with carbidopa versus standard levodopa and carbidopa to see if the former causes dyskinesia:
The Antiparkinsonian and Antidyskinetic Mechanisms of Mucuna pruriens in the MPTP-Treated Nonhuman Primate
ryanJames1• in reply to
Yes thank you very helpful I appreciate your thoughts
Yes, I stopped ropinirole, easing off that drug while starting Mucuna Pruriens. I have now been on Mucuna for 7 months. I do not like drugs--there is always a kickback from them when they stop working.
God bless!
My husband weaned off Azilect after 3 years, as it was not working well and he felt his mood deteriorating as symptoms worsened.
I started researching Mucuna Pruriens, and he started it in March. He feels so much better, sleeps well with low dose Melatonin, and tremors improved. He really has no side effects either. He still had some slowness of movement at times but no balance issues.
He finds the best exercise is the treadmill, due to the forced pace.
This is his only treatment now. There is no risk of developing dyskensias on Mucuna alone, and those already on Sinemet usually cut way back on their dosage, otherwise can get dyskensias as total dose is too high.
Mucuna is from the velvet bean and has been used in India for over 2,500 years to treat Parkinson's. I found a book on Amazon that was very helpful.
"Mucuna versus Parkinsons: Treatment with Natural Levodopa" by Dr Rafael Gonzalez Maldonado.
Mucuna is available at lower doses in health food stores as a "nervine tonic", to build muscle and improve libido. PD treatment requires higher dosage.
Being a natural substance, it works on serotonin, dopamine, noradrenaline, adrenaline and many more unknown substances, including an effect similar to carbidopa, and nausea is not a problem as it can be with synthetic levodopa/carbidopa.
No drug company wants to talk about this as PD drugs are cash cows, and when you can't stand the side effects any more, well, then there's DBS.
Good luck! Strongly encourage reading the book but know that Mucuna can't be taken with MAOI's, such as Azilect (rasagiline) or seligiline, due to risk of dangerously high blood pressure.
As always, discuss with neuro Dr but don't expect much knowledge or encouragement.
An Ayurvedic practitioner could help with dosing.
You are your own best advocate...you are the one living with PD, and the side effects of Rx meds. Good luck!
So helpful thank you
I have experimented with tyrosine as monotherapy; tyrosine with .40% levodopa from MP and now to 99% pure levodopa in conjunction with 94% pure EGCG, 1,000 mg salmon oil and 200 mg of vitamin C with or without quercetin. I use Sinemet and Stalevo as models as a springboard. EGCG like carbidopa is a decarboxylase inhibitor but is poorly absorbed hence the 94% pure EGCG + 1,000 mg salmon oil + 200 mg vitamin C all taken on an empty stomach with no caffeine, calcium (milk) or hard water which has minerals to inhibit absorption. It must be taken on an empty stomach upon waking and at 4PM (preferably) 2 hours before a meal. I wrote on this topic before and its dangers too. EGCG, in the wrong hands - reckless dieters, have had liver damage from taking large doses of green tea. To limit this possible downside the EGCG combo should be taken with quercetin and bromelain. Bromelain is a enzyme from pineapples with helps quercetin to be absorbed. Quercetin is liver protective and is a COMT inhibitor like Entacapone - in one study it was recommended to be a adjuvant therapy for those taking sinemet. When EGCG, Quercetin and 99&% pure natural dopamine from mucuna pruriens (which is what I take) are added together (with salmon oil, vitamin C and bromelain) you have a natural form of Stalevo.
"Stalevo is a combination of carbidopa, levodopa, and entacapone for the treatment of Parkinson's disease."
EGCG as decarboxylase inhibitor (like carbidopa): ncbi.nlm.nih.gov/pubmed/113...
EGCG as damaging to the liver: nutraingredients-usa.com/Re...
How to make EGCG better absorbed: ncbi.nlm.nih.gov/pmc/articl...
Quercetin as COMT inhibitor (like entacapone): ncbi.nlm.nih.gov/pubmed/127...
Quercetin protects the liver: google.com/webhp?sourceid=c...
I waited late in the thread to mention this just in case you want a completely different option. The 'combo' can be used with mucuna/levodopa that is less than 99% pure.
Hi Ryan, Im curious about your progress since taking the mucuna. Has it helped you?
Hi Tinacat
Yes! Best result was huge improvement with foot dystonia Also much more flexible on left side than I was prior to starting on Mucuna
Tremor is not noticibly improved but also no worse, it's more to do with how calm I can stay lol!
Thanks for asking
Hi Ryanjames. I just saw this post. Are you still on the same things you were on back 5 mths ago? How are you feeling?
Hi
Yes halved my Mucuna to half a teaspoon twice a day
Added NAC
Added Citicoline recently as well as
Filibuster acid and selenium
Also use topical Magnesium oil
Over all improved tremors and dystonia still Med free
How are you going?
Folic acid
I'm doing pretty well. Diagnosed over 13 yrs ago & have been doing Rock Steady Boxing for over 10 yrs. Most people can't tell I have PD. I take 4 C/L, 2 Azilect, 2 Amantadine per day. As far as supplements, D3, Krill oil, coconut oil & healthy chocolate. I also take Emergen C. It has 1,000 mg of C, magnesium B vitamins, electrolytes.... I sometimes take Protandim but it's a little pricey. It has 4/5 herbs tha help oxidative stress, 1 is curcumin. But I'm always looking for something new and/or better. Sounds like you've found a good combination. Keep fighting!
Thank you and you
Yes I also do coconut oil and dark chocolate
Will definitely keep fighting still have glass half full
Im currently taking a new brand of mucuna, nutrivitashop.
Hey Ryan,
Thanks for your informative blog.
Bèen diagnosed 2 years ago.
Doing things natural way and avoiding pharma meds only Rasagaline.
Any further advice on natural alternatives/supplements
I'm currently taking
twice daily 300mg natural ldopa.
twice daily 1500mg b1
8g mannitol,
daily twice daily 1000mg vitamin c,
600 mg Ncl
375mg magnesium citrate
I've seen progress but don't want to leave any stone unturned in my desire to get back some of my movement and fluidity.
I also run, box, do weights and hiit 3 times weekly each one.
How are you progressing and if you have any advice it would be greatly appreciated
Many thanks
Jake
I jake
I also do half a teaspoon of cinnamon a day in Coffee together with a teaspoon of MCT oil
I am well seven years since first symptom I also exercise but not as good as you are walk do I leg Master machine and some Pilates so not too bad I’ve just turned 65
I have tremors left and right hand and left leg a bit unco and have become more self-conscious of Tremor even though it’s no worse… I have found the Pilates really helpful with increasing strength but it sounds like you are pretty okay with that…
What are your symptoms?
Gait issues and balance
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