PD symptoms 3/15; DX 2017 - DX marginal (per my Neuro) due to not having traditional symptoms and for the fact that I lead a full life, own a business, work a lot and travel quite a bit with no issues. I know I may be in the honeymoon phase, but, I’m taking it one day at a time.
I have been taking Barlowes Mucuna 40% powder for quite some time. 1/4 tsp 2x daily and sometimes more if the tremors present again which usually happens in the afternoon. When I take it in the AM I’m good for 3-6 hours until I’m stressed, tired or I’m sleeping too long then the tremors come back sooner.
My question is how much of the 40% is truly LD? I also experience a ton of nausea which I can combat with 1/4 tsp powdered L-Tyrosine and that works great as a precursor. I experience so much gas, belching and sometimes projectile vomit that I’m unsure of what I’m doing wrong.
I refuse traditional medication of any kind as I’m aware of the side effects to the body and the brain. I will never ever take traditional meds as I’m convinced symptoms could get worse.
I’m starting the B1 regimen this week with 1 tsp 2x daily to hopefully help the progression.
Any information, encouragement, and tips are most appreciated!!
Best,
Rita
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The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
"...how much of the 40% is truly LD?" All of it. That is, Barlose' label says that 40% of a serving (which is 650 mg) is levodopa, making it a 260 mg dose of levodopa. Have you weighed a teaspoon to know how many milligrams it is? If your teaspoon is 2 servings, (and it might be more,) that's a 500 mg dose levodopa which could be causing the nausea, because it might be causing a spike.
If I were taking Mucuna and it made me nauseous and vomiting and ..., I would reduce the dose.
I don’t read it that way and don’t think it is. I can take up to 750 + mg Barlow’s and not get nauseous (300 mg L). (Powder weighed on scale). If I take more than 400 + mg nutrivita 100% I get nauseous.
PS. Regarding your abstinence from traditional drugs, while there are differences between Mucuna and Sinemet, functionally they're the same thing. We are getting an outside source of dopamine, which always works better if it's part of the whole plant, which Mucuna does, it is still an exogenous source.
It’s my understanding and I could definitely be wrong is that nutrivita is a mucuna extract as well. I purchased both (minimum) to test when I’m real shaky. Only tried a few times. I agree the plant would be the way to go.
OK so from what I read dextrin is actually an enhancer/binder and it has glucose in it and so that is why I feel that my blood sugar dips at times when I take it or why I get nauseous possibly. Is there anything that I can take that is pure 100% Mucuna?
I think all of us should take a cue from this because if this 1 supplier is doing it, some others may be too. If the bottle says, "Mucuna Pruriens extract," maybe there's no MP in it.
They put the word "extract" on a different line and in a different color so that is not read together with words "Mucuna Pruriens." It's stone, cold fraud.
Marc, I don't feel same. It is 40% MP Extract, just as it says. I don't feel they purposefully attempted fraud. I ass u me (d) it had MP in it. I should have inquired as I have done today, thanks to this post. The person who answered was right up front with no misleading. I have a feeling, but not sure that any retailer that sells MP extract is probably just that, , extract of LDopa. When I have some time I will inquire with some and post findings.
Yes. I agree. But I also feel responsible for not inquiring what the ingredients are. The label does not say “seed” as NOW product does. So does Swanson. Just checked on Amazon. NOW says 15% Ldopa. Swanson doesn’t even give an amount. Either does Bulk supplements. Their info is more confusing. Buyer beware for sure.
I checked a few brands including powders on Amazon. NOW brand gives “seed” on label as well as others such as Swanson. However NOW gives you L-Dopa % (15%). Swanson does not. So. I will look for “seed” on the label ...so you know you will get actual mucuna as well as the dosage.
I am looking at the side mucuna picture on Barlowe's website and it says Mucuna Pruriens Bean Extract (40% l-dopa) and the certificate which is shown states that it uses dextrin as the carrier. Also see there are several brown mucuna 40% l-dopa products on the site - the one I read said it uses mucuna bean as the carrier.
Search for the member Tarz here. She takes 100% MP powder. I believe it does not list the % of L-dopa and typically real MP powder has about 7-8% l-dopa. See Banyan Botanicals.
I think best to contact each seller prior to purchase. I have a feeling that most, if not all vendors selling extract is just LDopa+ fillers. When I have time I will contact a few and post findings.
I researched Amazon and noticed most capsules said “extract”. Some said (seed). But the extract (seed) could just be L-Dopa without any actual MP as L-Dopa is an extract. Most vendors were vague regarding extract or just the mg of mucuna. When ready to purchase I will contact vendor prior.
The MP does cause the nausea. Typically in the morning I take my thyroid medication and then I take a quarter teaspoon of the powder in a little bit a water and drink it down. If I have a BM before I take the powder then my system is pretty clear to receive the dose. Typically what happens is I start to burp and I can get nauseous and then at times I can projectile vomiit. Now if I eat and then wait a few minutes to take the dose it doesn’t work as well because it has to get through my digestive system which takes more time and even when it gets there it does not take care of the tremors as well as it does when I have not eaten. Very frustrating.
My math is a little rusty, so bear with me, but if Barlow's says the product is made of 40% levodopa and 60% dextrins, that leaves 0% of Mucuna -- the 400 other compounds that cause it work better.
Barlow's is causing your nausea because you're taking a high-ish dose of levodopa without carbidopa or Mucuna to mitigate it.
Not sure how they get away with selling the stuff as Mucuna Pruriens if it doesn't contain any Mucuna Pruriens.
Barlow's at least offers assays on their product. It is too strong for me, one capsule triggers dyskinesia. But, I've ordered another brand that is MP 20% L-dopa that was totally inconsistent from one bottle to the next.
I could do that, but I don't really want to be measuring my doses every hour. It is extremely inconvenient and, for me, there is no advantage to mucuna over c/l since both give me dyskinesia no matter the size of the dose.
Search here for other posts on MP. There are things you can take with MP to mitigate the nausea such as green tea extract which has a similar action to carbidopa. There is much already posted about this by persons much more knowledgeable than me.
Thanks for the post. My husband has been on Barlowes since end of last year, I assumed it was the whole bean, now I find out it's pure l dopa with dextrin?? I am really disappointed as I thought we were supplying him with the all the benefits of the whole bean. They are misleading their customers then aren't they. So now I will need to find an alternative as I am not happy with what I have just found out. Any suggestions,,,anyone on a good brand? We have the pure Nutrivita powder but this gave him nausea, and does not have the rest of the bean in it. I have a now brand 15% bottle still so maybe we will try that again. That's for informing us.
If you want the benefits of the whole bean you need to take brown mucuna extract. No white mucuna extract has much whole bean in it - though of course the l-dopa comes from the bean.
Well Rita you are experiencing Mucuna side effects but as you shun traditional meds because of side effects I guess you must think mucuna side effects are preferable.
Sin = without
Emet = vomiting
Sinemet = without vomiting. This drug was developed because of vomiting problems with l dopa alone.
I’m thinking of brain side effects. Additionally I did find a brand that is 100% from the whole plant and has no fillers or additional ingredients like the Barlowes has. Further no one likes to vomit but I’d rather keep my brain intact as the vomiting is not a regular occurrence. Thank you!
I’m wondering what the brain side effects are? I have been on sinemet for over 10 yrs.
One other thought about mucuna, I dont think there is any legislation that requires the amount of l dopa to be consistent in differing batches so one needs to find a supplier that is consistent and is trustworthy.
True Mucuna from the plant and seed has levodopa but far less than some of the other ones on the market that have fillers and such. Additionally a true Mucuna will have enough to balance the actual levodopa in it so the side effects would be far less.
I’m lost now! True Mucuna has less levadopa than other ?Mucuna. So some Mucuna has fillers etc, I didnt know that. I guess its buyer beware. Yes mucuna has other good ingredients as yet unknown, but I dont know that it makes side effects less.
I dont know what you have been told or read about side effects that worries you about conventional meds but there is alot of ‘fake news’ about these days 😉
True, but I really haven’t been reading much and I work with one of the top neurologists in the state of New York. Yes we were talking further up in the thread about using Barlow’s. I didn’t know that it had 60% dextrin which is a filler and a binder. The 40% is just LDOPA from the extract and not the plant. Thank God for the other people on this thread because they really know their stuff.
Tyrosine might decrease how much levodopa the body absorbs. By decreasing how much levodopa the body absorbs, tyrosine might decrease the effectiveness of levodopa. Do not take tyrosine and levodopa at the same time.
Still don't know what you expect will happen if you take conventional meds.
I do not take L-Tyrosine regularly as it depends on if I have a nauseous stomach in the morning. If I don’t then I don’t take it. In terms of taking conventional medications,
No, of course there is potential for side effects from any substance taken. Dyskenesia occurs when one is on levadopa (though i don’t have it after 10 yrs of sinemet) whether it is a manufactured drug or mucuna, times may vary on when it occurs but I dont know any study on that.
I was curious to know what the brain/cognitive effects Rwor is concerned about but the answer is very vague, the article was measuring motor effects.
Also if you look further along in a thread from today you will see that someone that does take Sinemet does vomit or have vomited from it. I think it really is case dependent because all of us are different.
That's the point I made above, i.e., Mucuna and Sinemet are functionally the same -- exogenous source of levodopa/dopamine.
It is true that some people can take levodopa indefinitely without dyskinesia just as it is true that any PWP can get dyskinesia from any dose over any time period -- to include from a single dose inducing within a few days as has been recently reported on this forum.
Hi everyone, I emailed Barlowes this morning for clarification, here is the reply:
"That is not quite right. The mucuna product is 40% l-dopa, and there would be a small amount of the rest of the bean as well, plus dextrin as the carrier. Pure 100% mucuna bean l-dopa is not used in the blending process, though a fairly high percentage extract is which would contain some bean. Absolutely all white mucuna is made this way, including CHK. If you want 40% mucuna where the carrier is bean powder, you have to get brown indian mucuna. I have that in stock as well, and at a cheaper price. It is $150 a kilogram. I have a couple of customers that use it - the problem with brown mucuna is that it tastes terrible, and not many people can handle that, while the white mucuna is almost tasteless."
I have just replied to him re possibility of making capsules of just the whole bean powder, the yuck brown one he mentioned above - (I guess they'd have to be huge or have to take too many to get effect?)
I called and asked the question yesterday morning. They advised me the extract from mucuna was L-dopa and the rest dextrin. I guess the question is HOW much of the bean is in there.
Just spoke with a nice and informative gentleman (nutritionalist, not customer service) from NOW regarding their capsules. The capsules have a small amount of filler (necessary to load capsules) but yes, it does contain mostly mucuna with 15% extract of LDopa from the plant itself. Still awaiting response from bulk supplements. I chose NOW as it is recommended by Dr Maldano’s book Mucuna vs Parkinson’s.
Just spoke with Bulk Supplements and unfortunately they were not able to provide requested info re: % of mucuna and LDopa %.
I just bought Barlow's, I'm using it to try and cut down on cardopa/levadopa. I take one cardopa/levadopa with half a capsule. I tried whole and it's to much, it gave me Dyskinesia. The bottle says extract from seed, and no fillers just l-dopa 40% and Mucuna Pruriens extract 650mg., that's why I bought it. I'll be contacting them. Thanks for info.
I've been using Barlowe's white mucuna 40% for quite awhile and it works well. It is high potency mucuna pruriens L-dopa using a dextrin carrier, at least that is what the certificate of analysis says. I think that is what all white mucuna is. Don't have a problem with nausea. They also sell brown mucuna 40% that uses ground mucuna bean as a carrier but I cannot handle the taste.
so if u want real pure natural dopa, sprout your own fava beans and eat them, as per your need, of course on a steady basis- starting low & slow- there's a video of a woman who does this for her pd husband... she shows how to do it. Don't have the link offhand, sorry-
Thank you! I have heard of doing that the only problem is I live in the middle of New York State and it is not warm year-round. I think the woman you’re talking about is from Tennessee correct?
I do have some nausea and always vomited with Sinemet but I now take M Pruriens and find I have less nausea if I eat, wait a hour and then take it. He went on Sinemet and still finds he's nauseous if he doesn't eat first. Will have to try the L-tyrosine first as well. Nice tip.
I take 1/4 tsp L-Tyrosine then wait like 30 minutes and then do the 1/4 tsp of MP. It works quite well. For me if I eat, the MP takes longer to get into my system.
Which MP do you use? I’m switching to brown whole bean as the brand I was using was not what I thought.
Now I use NutriVita (1/8th tsp.) from California that works very well and is very pure. I also use Zandopa (1 tbsp.) from India that I'm finishing up. Also bought whole bean (Organic Traditions also from India) that I didn't stick to using because wasn't sure of dosage. I like the effect of the whole bean powder sometimes better than NutriVita. Even tried DopaBean but needed 7 capsules to get the same effect.
Could you let me know how much you use of the raw powder? More than 1 tbsp. dose ? as I'm thinking it's more like Zandopa (1 tbsp.) for strength but Zandopa is more refined so might need more of the raw powder. I would like to figure it out soon and maybe encapsulate for ease of taking on the go. Interesting thread and informative. Thanks ...Linda
Hi! Trying to find the right mucuna brand for my dad who has been on sinemet for 12 years. Where are you at with all this? Also, why do you like the whole bean powder better than the nutrivita sometimes? thank you!
I've tried Zandopa and the whole organic mucuna powder as well as other brands that I had to take too much of. I like NutriVita since it's easy to take and no taste (stains cloths and clothes though). It says on the package 1/8th tsp. is 500 mgs. and I found that amount equals the effect of 100mg Sinemet. If I go over it I get sick just like I did on Sinemet. It lasts about 3-4 hours. It's very refined but I don't mind. I think the whole powder has some other benefits. It helps with constipation for sure. But the taste is too much for me. I live in Canada and ordered 1 kg. to last me so I wouldn't have to pay shipping again. Zandopa worked will but, again, taste awful and have to order it from India. Hope this answers your question. Linda
Thanks Linda, this info is super helpful! We decided to try DopaBoost . . . if it doesn't work, we will try NutriVita. I find access to these alternative dopamines really limited in Canada, but glad they ship to here. Its really difficult trying to figure this all out ourselves so am really grateful for your perspective.
The Hines protocol uses 40% Mucuna and tyrosine similar to what your trying to do. I’ve been on it a couple year substituting Barlow’s Mucuna and tyrosine and haven’t had a nausea problem. There’s also a couple amino acid pills plus B6 that are needed for it to work. I’ve added 2gm of B1 also on my own. I’ve been able to cut back to once a day for the last 6 months. I take 7 gm of Mucuna and 10 gm of tyrosine so I’m taking a larger dose than your dealing with. I’ve went from 3 doses a day to one now. I tried the darker bean powder( not Marlowe but couldn’t stand it) . The white powder I believe works as good a the more expensive (CHK) powder and makes the protocol doable. I’m not 100% but more like 80% of what I could be. I couldn’t practice dentistry anymore as I don’t believe I could handle the stress. My wife is a PhD toxicologist and approves of what I’m trying. I’m also utilizing a Vielight to see if I can jump start by brain. So far something is working or I’m accommodating my limitations.
The Vielight is supposed to excite your brains mitochondria on the assumption that the cells are not dead but in stasis. One theory of Parkinson’s . My neighbor in Florida has his wife use one following her stroke . There’s a university study going on in Florida using them for Parkinson’s. I found out about them from a old researcher at our condo down there , who’s studying ptsd in Veterans and trying to keep his brain active . May be helping as I’ve reduced my doses?
First response got lost? Vielight is supposed to excite your brains mitochondria to bring the damaged cells back on line. One theory is that they’re only in stasis n not dead? Research is being done at a Florida university currently. I found out from an older researcher who’s using one to keep his brain active. My neighbor uses one for his wife following her stroke. Hard to say if they work but his wife is better and I’ve reduced my doses? Definitely in experimental phase but I didn’t want to wait . I guess I’m figuring I’ve got less to lose now. Not much risk from what I read. Effective???
The Vielight is a brand of a infra red light head set. I think they had or have a 60 % money back offer after 6 months if not satisfied? There was a discount code offer thru ,I think, Rogers Parkinson’s blog? I kept mine as something seems to be working?
Hi all, I have just ordered Banyan Botanicals organic mucuna seed powder in capsules, not from concentrate just the powdered bean and a couple of harmless fillers. Overall we are still happy with the Barlowes so will continue with that and will add one capsule of the Banyan mucuna with the Barlowes so we (husband) can get the benefits of the whole bean.
Hi, I've just had a look on Amazon and it's not showing, not even the powder, when I google it and click the link it says page doesn't exist. Not sure why, maybe a glitch? I've double checked my order and its on its way so it does exist. Another one I would have gone with was Tattavas which is basically the same thing, again when I click it it says page does not exist, so not sure what's going on there. It's also called Kapikacchu , and I gather if you find a good quality, organic bag of that then that is the same thing, yet as its supposed to taste awful that's why I went with the capsules. Will keep checking during the day.
How much do you take, those of you taking whole seed powder? (I have Kapikachu) powder form and will be putting in capsules. How many should I be taking that would be equal to 25/100 Sinemet, if you don't mind my asking? Thanks....
Hi, I have read that the % of l dopa is anywhere between 3-7% for just the powdered whole bean. So I would maybe calculate an average of 5% then for example 20g would = 100mg, that may be as much as 4tsp or so but you'd need to weigh accurately. As with all mucuna whether the extract or whole bean its trial an error as to how much works, start low, see how you feel and adjust accordingly , also don't take the 'full dose ' of mucuna with your normal dose of sinemet as you'd end up having too much l dopa. Read more on this site on how others have done it, I am not giving any medical advice , read read read and decide for yourself.
If you can open the link I provided, it will get you to his home page where you will see bottle pictures of the MP. Click on "Dose and Presentations." Sorry doesn't provide any information, but I have saved his on-line book, I will find it and post it.
What you need is MP SEED extract. Barlowe's MP is not seed extract, just L-dopa extract with a filler. When you buy MP SEED extract, look for total extract mg, multiply it by percentage of available L-dopa and you will get the amount of L-dopa. For instance, NOW total extract 800mg X 15% (L-dopa) = 120mg of levodopa in two capsules (serving size).
Barlowes does sell an MP seed extract. You have to ask for it and it’s $80 for the pouch and I bought it. The difference is the filler in the 40% white powder is actually maltodextrin which acts as the carrier and gets in the system quicker. If you do buy the whole seed extract it takes longer to get to the system because it’s the seed extract and ground up MP. It is also 40% and is the same as the white powder version.
Hi Rwor! Good to know Barlowe's is selling whole seed extract. According to literature I have read, whole seed extract has a lot of qualities which pure L-dopa doesn't have. Fortunately, our (hubby's) Vanderbilt MDS prescribed carbidopa to enhance absorption and bioavailability of MP whole seed extract, although this extract does have substances that act as carbidopa.
hi! is the NOW brand effective for you? it seems to be the only mucuna extract in pill form i can find online in canada (ive visited 4 stores here with no success!). also, does that mean the NOW brand is an MP SEED extract? thank you!!!
pdwife41yrs Mom I think this is the one we need that will help !!!
Yes, NOW is whole seed extract. Two capsules plus 1/2 tablet carbidopa. Also, you can take 1/2 t Sinemet with one NOW capsule, but no need to take carbidopa with this combination (carbidopa is in Sinemet).
I don't know how long you have been diagnosed and what your needs are. You just have to trial doses and combinations. Hope I have helped.
yes, this is super helpful! now is on its way, fingers crossed. will report back. we are also going to try experimenting with dopaboost. its been 12 years on sinemet for my dad and his freezing is the worst its ever been. his sinemet barely works anymore, lasts 1.5 hours, 2 at best. a tablespoon of mucuna an hour after his sinemet doses have allowed him to keep sinemet doses 3 hours apart, but this is such an intense schedule, and the mucuna makes him feel full and nauseas. better late getting on the natural train than never. thank you so much!!
You are very welcome. I hope you find the right dose and combination for your dad. My husband has taken DopaBoost and he was happy with it. You have to trial doses and combination as every PwP is different.
You may "Search HealthUnolocked," upper right corner, just enter "Mucuna Pruriens" and you will find many posts and comments on the subject.
Yes, he is on 1/2 t Sinemet and two capsules NOW MP twice a day. Mid-day, he has two capsules NOW MP with 1/2 t carbidopa or one DOPABOOST capsule. Some days he takes no Sinemet, just two capsules NOW MP with 1/2 t carbidopa three times a day. He is not on a standard meds schedule, it just depends on how he feels each day. He was diagnosed in March 2018, but symptoms had started several years before then.
You are very welcome! Remember, every PwP is different, and what works for one, it doesn't necessarily work for the other. It's a never ending meds dosage trial.
NOW capsules contain the whole seed, not just L-dopa which makes it neuroprotective, has other ingredients that are not in pure L-dopa. Each capsule is 60mg L-dopa. Look on the bottle and read the total MP (800 mg) multiply by 15% and you get the L-dopa for two capsules which is 120mg L-dopa. You can also open the capsules and put the powder in a little water, dilute it and have your dad drink it. That way it reaches the brain a lot faster.
I have a hard copy and it lists Now, Biovea, Solaray, Zandopa and Paradise. All these products are from reputable sellers. It also has of picture of Banyan Botanicals.
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