Can mucuna take time to work? Can it take days or weeks? I took my first dose this morning, for tremors, and was hoping for a miracle, but nothing. 700mg of 20%. Might I need to just continue for a while, o r should it have already worked, if it was going to work?
I took another dose and still nothing. Someone suggested I try another supplier. I can't believe that would make a difference.
The bottom line is I'm very upset about this. I had an OD reaction to B1, and stopped 2 weeks ago, and am worse now than ever. I am barely getting any sleep. I need something to handle these tremors. Any ideas would also be helpful. I'll be making gloves but that is weeks away.
Thanks
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Gregg_K
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Anything you do will take time. Anything you try can take weeks or months . When I started Resagaline the Dr. said it will take up to 8 weeks for max benefit. I'm off it now. I'm doing b1 therapy, mucana and fast walking 3xs a week.
I don't think I'm seeing much benefit from the mucana but more from b1 and the fast walking.
That may be true for some people. I can only go off my own experience. I'm reading about others PD experiences, particularly success stories. It appears that medication and lifestyle alterations take time to show benefits.
I’ve been taking Mucuna for more than 6 months and it’s had no effect on my right hand tremor. I also take levodopa and that’s had no effect. Tremor is the hardest PD symptom to stop or improve.
How is it going now? Are you still taking the mucuna? Any change? I have taken it a few times and when I mostly felt anxiety didn't bother to take it again.
It is bot helping you becuase there is NO MEDICATION WHICH SUCCESSFULLY REVERSES PD!!!! Don't waster anymore time with medication and bget off yourt bum and walk, as fast as you can for a maximum of one hour, every second day and withing 2 years you will be BACK TO NORMAL! The is no cost =, only EFFORT!
John, thank you. I've watched your videos. I've been fast walking for ten years. The first 6 for 1 mile, or half an hour. But all I have for walking has 30% grades. Fast hiking. Then the remainding years for 2 miles per day. I've recently doubled that, but it's often more than I can handle.
being already on Sinemet, how do you reduce the dosage gradually while you get better with fast walking? Maybe I am missing something, because If I understand it correctly, fast walking should be closely linked to Sinemet withdrawal.
Does Sinemt need to be slowly withdrawn? That is not a silly question, because I stopped Sinemet and went onto an MAOb inhibitor, a type of GDNF producing medication, which did not get rid of my symptoms, so I simply came off that and started the walking.
When I was first diagnosed, I was absolutely sure I didn’t need medication and I just quit like you did. My neurologist came unglued because she said that you could die from withdrawing that way. I’m glad you were OK! Other folks may want to check with their doctors before changing their medication dosages.
If fast walking brings improvement, those are slow processes. More a matter of years than weeks. So enough time to make adjustments. You will notice for yourself whether you can slowly decrease.
It is because no medication e=helps to reverde PD. The only wa =y to do tbhat is to start walking, as fast as you can, for a naximum of one hour, every SECOND DAY! I wa sdiagnosed with PD in 1992 and in 1994, because my wife was doing it, I satrted to walk, as fast as I could, for 1 hour, every second day. Since 1996 I have walked normally and have stayed PD-FREE!
I am not a doctor but I am sure that exercise will do the BP a lot of good. As k your doctor first. Remember that you only need to do a short warm-up walk and then walk as fast as you can fo r as long as you can and your heath will improve a great deal. But, speak to your doctor!
Once you can accidentally make your PD FREE claim, but you are now using it as some kind of spam that harms your important message.
While exercise, like fast walking, can certainly help minimize and slow down symptoms, it's essential to remember that it's not a one-size-fits-all solution. Each person's experience with Parkinson's is unique, and what works for one may not work for another.
So, let's keep our feet on the ground and avoid giving false hope or making exaggerated claims. Parkinson's requires ongoing attention and treatment, and exercise should be seen as a valuable tool within a broader plan.
Thanks for understanding and for keeping the message real.
I Assume you are in one way or another involved with the medical profession and I don't blame you for protecting your territory, but, I have to stress that only after i had STOPPED TAKING ANY PD MEDICATION AND STARTED DOING FAST WALKING, did my pverall health start to improve! You acn draw whatever conclusion you like from that. I am sure that there is NO MEDICAL CURE FOR PD but, IF YOU DO EXPERIENCE SOME POSITIVE HELP FROM MEDICATION THEN KEEP TAKING IT! Otherwise, if it is not doing abything positive for you then STOP TAKING IT!!!
It appears that we both share a common experience in the medical field, namely the frustrating lack of understanding. If you took the time to read the posts, John, you would be aware that we are both individuals battling PD with a strikingly similar narrative, except for your reliance on MAO-B inhibitors / fast-walking and me with a B6 supplementation. / sunlight.
Regrettably, PD remains an affliction without a viable cure, be it through medication, exercise, or any other avenue explored thus far. Nevertheless, we can strive to enhance the quality of our lives and impede the relentless progression of PD. Each of us must find our own unique approach to this battle.
Hi Esperanto. I do not rely on MAOb inhibitors. I havn't aken one since 1992. I said that that was what I was taking.
I have not needed to take any medication of any sort since 1994! I have done FAST WALKING EVERY SECOND DAY FOR ONE HOUR, ever since then and have stayed medication and PD Movement symptom-free ever since. NO MEDICTION. ONLY WALKING!
Hi John, I don't believe so much in mono therapies, PD is a bit too complex for that. Fortunately, in your book you tell a different story and say that other factors are important, including MAO-b inhibitors. “The combination of energetic exercise and an MAO-b inhibitor have, in my case, appeared to have brought about a big improvement in my condition. This combination has not cured my Pd, but it has reversed the symptoms enough to give me an acceptable quality of life.”
You have made my day, thank you! Give thewwalking TIME! Never stop doing it! I did, against my own advice. I got lazy and stopped the regular walkingm, recently. I am now 89 and thought I no longer needed to think about what I was doing, while I was walking. Did I come a cropper? You bet I did. I had a terrible fall but, did not break anything. How I did not break anything was a miracle. I fell very hard! I realize that I have become complacent and I took my mind off of what I was doing and came a cropper. It serves me right. I should listen to my own advice, but there it is! I am an idiot! I must always concentrate on what I am doing! That is a rule, which must never be broken, especially at my age!
John, you harp on fast walking while stopping PD medications. Why not do both? I stopped Rytary for one month. Few side effects from the lack of Rytary during that month. I developed double-vision late in the day which tells me it's time for the evening dose. Now I'm back on it while doing the fast-walking protocol you suggest. I have a dominant-hand tremor going back several years but that plus the double vision is about all for symptoms.
The only meds I took were Sinemte and replaced that with an MAOB inhibitor. Neither of those gave me any sideeffects. Maybe I was luicky, but I was not on either of them for more than twelve months. No-work, no-take is my mottto.
There are many contradictions in his story over the years. Do you really think he has Parkinsons?
A few years ago John wrote that the Neuro who diagnosed him....... “described my tremor as 'Essential Tremor'. I am not aware that it happens in isolation (from PD). When I gave up drinking tea and coffee my tremors almost disappeared altogether. I do not have a resting tremor I have the essential tremor. I shake when I am trying to do any fine motor functions like fastening a button. However, when I am under stress, everything is a lot worse”
Another time he wrote : “I am the only Pd patient, that I know of, who has managed to reverse many of his/her movement symptoms. I am also the only patient, that I know of, who has not had to take any Pd medication anymore. For the past 11 years I have not needed to take any medication for my Pd. I had been taking Eldepryl for over 10 years, up to 2002. Other than taking that medication, I gave up my highly stressful job, immediately after diagnosis. “
Apologies John. I think I understand now what you wrote: You meant that you had problems walking, as is the case for most with PD, and that after 2 years of fast walking your walking had become normal. You then continued with your regimen and remained "PD free".
It is because it does not work! Try walking as fast as youy,can for a maximum of 1 g=hour every second day? Wiothin 2 years you willl be PD-FREE, as I , and many or=thers have.
It is because it does not work! Try something that does, whic is walking as fast as you can for a maximum od one hour, every second day. Within 2 years you will be PD-FREE
Every case of PD is different.We are all unique.No one can guarantee that their particular success story will work for everyone else,no matter how successful it is for them.Do research on the supplier of your macuna,are the reviews of their product genuine? Make sure your product has no fillers or binders,.Is it too strong? My husband upped his dose of macuna and had tremors and restless legs for 24 hours after,so too much can be just as bad as too little.we both really hope you can find what is unique to you and brings relief.
The natural equivalent of carbidopa is 5htp. It blocks vitamin B6, so that mucuna (levodopa) can pass through the BBB. The good thing about 5htp is that it does this function naturally, and the blocking of B6 is reversible, while carbidopa wipes out vitamin B6 irreversibly. You can get 5htp over the counter, just like mucuna.
Green and black tea help as well. I am a caretaker and have tried it on my father with some good results for tremors. But 5-htp has been tested to work by naturally blocking B6, so that mucuna get pass the BBB. The more it crosses BBB the less you'll need to take for good results, and less nauseous you'll be. Good luck!
Thank you! I want as little as possible. I have noticed low blood sugar the two days I've tried it. No thanks, I'd almost rather have tremors. I've got a note- 5-htp if tea isn't good enough. Maybe I'll stop shaking enough to get an actual nights sleep again.
Do you have any links to research backing this up?I can find articles stating that 5htp crosses the blood brain barrier to create serotonin. But I can't find any article suggesting that it binds to ldopa/mucuna to take levodopa across.
5htp doesn't bind to Ldopa/mucuna. When taken together it temporarily and reversibly blocks vitamin B6, so ldopa is not metabolized peripherally, and is able to cross BBB. Carbidopa simply mimics the actions of 5htp, but unfortunately it blocks B6 irreversibly, and thus with time, depleting the body's stores and causing more neurological issues. Dr Alvin Stein and a team of doctors have conducted and published several studies on this. Try this first: ncbi.nlm.nih.gov/pmc/articl...
Yes. The book by Dr. Rafael González Maldonado is excellent. Here is a link to his work: mucunaparkinson.com/.
I have been taking mucuna for over five years and can achieve ZERO tremor with Keter /Wellness Mucuna L-Dopa 20 (mucuna extract) sold on Amazon. Here is a link : amazon.com/Mucuna-pruriens-... I take 5-6 capsules of this, spread throughout the day, when I feel that I need them.
Take it on an empty stomach for the most immediate and powerful effect (in 20-25 minutes). Each one lasts for about 2-4 hours and you will know when you need another because the stiffness and tremor will slowly and gradually return. I have tried other brands and they did NOT work, although they were the same dosage . I don't know why.
I also take 1/2 of a 25/100 sinemet pill 3-4 times a day but these pills alone will not remove my tremor. It was only when I added the Keter /Wellness Mucuna L-Dopa 20 that I got relief.
ps. Occassionally these pills cause mild nausea that last about 10-15 minutes. Sipping a small glass of pepsi or coke will relieve this.
Thanks for the link. There are many posts on pep taking mucuna but not many discuss getting it past the blood brain barrier. Your doctors link suggests taking Sinemet to utilise the carelodopa:
:What happens if one is not taking Sinemet or other drugs? Then mucuna levodopa may be insufficient.
This group of patients is complaining that the mucuna “does nothing” and the reason is that levodopa is removed rapidly from the blood by the decarboxylase before it can reach the brain.
The solution: mucuna may be combined with carbidopa which in some countries is sold separately (this is called Lodosyn).
And what if you cannot buy Lodosyn? There is the option of taking half of a tablet of Sineme
Can you tell me more? How did it eventually work? Or did it not? I can't take much more of these tremors. I'll be making the gloves soon, but I hate to think of that not working.
if it worked at all i didnt notice....i got tired of paying for it and increasing concern about purity as it comes often from china or related countries. the frequency of dosing was so high it became a full time job. i started to buy it in bulk but gave up. im sorry to tell you that...
Gregg_K , I truly hope you are working with a doctor - Movement Disorders Specialist (MDS). I am tremor dominant as well and I can empathize with your pain and commiserate with you. It truly seems like the worst is happening when the tremors doesn't stop
I do get enormous relief with Sinemet and the addition of Propranolol. I understand that Mucuna Pruriens is attractive as a "natural" option, but with all the products out there, the quality and the provenance of the products is questionable. No reputable doctor is going to help you with the so called "natural" product.
First things first. Get your tremors under control and you will need an MDS for that. Look for alternatives including fast walking by John Pepper if you want to later on when you can evaluate the options with a calm mind and body.
Also, I must warn you that if you do go to see a MDS doctor for a formal diagnosis, you should let the doctor know that you have been trialing Mucuna. The reason is that this trialing Mucuna on your own before the diagnosis ends up complicating the diagnosis, although a proper differential diagnosis is not impossible to make despite the history.
Inadequate Levodopa or inconsistent dosages can also make tremors worse. Further, this might limit the options for medication because you have already started on a path of Levodopa, which is a known treatment option (even if the doctors disagree with it) so the doctor will default to Levodopa because you already made the choice .
I am speaking from personal experience and the second guessing never stops. I am just saying that trialing Mucuna on your own causes way more complications than it is worth. Also, the DAT-SCAN test will be confusing because you are already on Levodopa..
Mucuna mostly sux. It can't get to the brain and the reliability of the commercial products is mostly poor (big swings in how much is actually in the tin). There's a reason very few experienced PWPs use it and it's not for want of its promotion by ideological naturalists (often PD-free, helpfully).
To be honest I haven't been diagnosed. I only have tremors, and until a month ago they weren't a serious problem.. Then I took one sublingual 100 mg dose of B1 monohydrate,, and all hell broke loose. And I'm still not getting relief. And until now I've wanted to avoid drugs. I dearly hope the vibration gloves work. And I'm rural and don't know if a Parkinson's scanning machine is nearby. I am quickkly gettiing morre open minded.
While tremor is a common symptom of PD, it can also be a symptom of other conditions, most notably essential tremor. The main difference between Parkinson’s tremor and most other types of tremor is that in PD resting tremor is most common. Other conditions are usually characterized by “action tremor,” which tends to lessen at rest and increase when you’re doing something, like trying to make a phone call or take a drink.
I really wish everyone would please say specifically what it means that something "worked" for them. Since everyone has different manifestations, everyone probably has different ideas of what "worked" means too. Right?
I've been using a combination of Mucuna Barlowes 40% and Nutri Vita Shop 99% daily. Diagnosed in 2015, started Barlowes in 2018 followed a couple years later with Nutri Vita Shop L-Dopa. I use both daily. If you look at my previous posts you should find everything spelled out. I don't write much anymore, because I'm busy still running my company, walking my dog and taking a nap now and then Nothing's perfect but i've found a system that works for me. You mentioned 20% strength, that would not be strong enough for me.
Because i wake-up with very mild to no symptoms i start my day with a 40% Mucuna. I keep them next to the bed. If i don't take one when i wake up symptoms will begin to appear in a half hour starting with tremor. Then the next 3 doses spread out over 3-4 hours each are 500mg of the 99% L-dopa. Sometime if i need a bit more I'll throw in an extra 40%, and days that I need a bit less, I'll use a 40% in place of a 99%. I make my own 99% capsule with The Capsule Machine it's easy. Just buy 00 capsules, i can make a 6 week supply in less than a half hour. If i'm going to an event like this weekend I'll go to a wedding, i will sometimes add a quarter piece of CL and get 5 to 6 hours symptom free, but i seriously hate the CL so i very rarely will add it, i mean very rarely. I've been at it for years now so i understand the signals my body is sending me and what it needs and when. Many people will say that the 99% L-dopa is the same thing in CL, but i think the NutriVita 99% is concentrated, and the CL is synthetic. Even if i'm wrong the danger in my opinion is the Carba-Dopa.
I wonder if you have to friend me to see my previous posts. i'll have to look to see if i can find them.
You’re possibly harming yourself and complicating your issues. Please see a neurologist (ideally a Movement Disorder Specialist) and get diagnosed. It may take a while to get in to see someone, especially if you’re rural and have to travel.
And here you’ve gotten all kinds of conflicting advice.
When I started taking mucuna,I had to continue increasing the dosage until my symptoms were relieved. Everyone is different. I started on the Hinz protocol and within 2 weeks I was up to 12.6 gms of mucuna and th at was my sweet spot where my symptoms were gone.
I have taken mucuna powder through the years with no effect. Tried different brands - still no luck. I recently started using DopaBoost supplements by Designs for Health. The active ingredients supposedly help the mucuna pass the BBB. I regularly use C/L (2 a day). I read somewhere that 2 DopaBoost supplements are equal to one 25/100 CL. So I interchange C/L and DopaBoost, depending on my mood and what I have planned for the day. I find DopaBoost helpful, but I also exercise every day, including fast walking every dat. I get the supplements from Amazon. I do not have tremors so I do not know if the supplements would address that issue.
Try a little 5htp each time you take mucuna and see if it helps you. It works just like carbidopa, but it's natural. And won't harm you in the long term.
The brand is Natrol, 100mg fast dissolve tablets. You can find it on Amazon. In terms of ratio it depends on individuals. You'd have to experiment on your own. For my dad it has been around 5:1 mucuna/5htp ratio. The tablets can be easily divided.
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Nothing's perfect but i've found a system that works for me. You mentioned 20% strength, that would not be strong enough for me.
ARE YOU A NON TREMOR DOMINANT PD PATIENT WITH DYSKINESIA? IF SO, PLEASE HELP.
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