We're trying to go in the opposite direction of many here by adding Sinemet to Mucuna and are having a heck of a time... it's been exhausting and a little scary. Hoping anyone here can help a bit.
For about 6 years now, my partner Jay (diagnosed 2009) has been taking only Mucuna at rather high doses daily. It's been working pretty well but there are some downsides and we were hoping to bring in some Sinemet to reduce the amount of Mucuna he takes every day.
Seemed like it would be pretty simple... just add a little Sinemet and allow the carbidopa to increase the efficacy of the Mucuna so we could lower the overall amount of Mucuna. We've been trying this for about a week and a half and there are all sorts of unexpected effects. He's been crashing off doses very suddenly and has developed new symptoms during the crashes like having completely rubbery legs and not being able to walk at all. Some other new scary things include not being able to open his mouth or hold his body... all just during he crash periods. Nothing like this has ever happened before. We can't tell if he's over or under or just can't integrate the two products. Would appreciate any thoughts at all!
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KuriousKaty
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You do not say how much Sinemet he is taking nor how often. Anyway, you can try reducing the dosage. The other factor to consider is that immediate release Sinemet is prescribed by default. Extended release versions may work better for him. See here for details:
Park Bear - I notice you post many helpful answers so I'm going to fire off a few questions. Thanks in advance!
1. I'm hoping to use this forum more but have no experience with how the engine works. If I'd like to ask another question of the larger group should I start a new thread or will other folks still see it if I just post it in a reply? And assuming there's no way to update my post with new questions right?
2. I know IR vs ER Sinemet is a hotly debated topic. Can you tell me why ER is your preference?
3. Do you know the conversion of Mucuna L-Dopa when Sinemet or Carbidopa is added? I've read different articles stating the strength of Mucuna L-Dopa can increase 2, 3, 4 even 5 times with carbidopa but that's quite a range! Do you know of a reputable source that can hone that in a little more... it would make a huge difference how much Mucuna L-Dopa I should account for when adding Sinemet. Also, I'm assuming there has to be a threshhold amount of carbidopa to make that conversion right? It's not just ANY amount of carbidopa would boost the strength of Mucuna L-Dopa so are these strength increasing guesstimates based on the basic 25mg carbidopa that's part of the standard 100/25 Sinemet?
4. Would the impact of Sinemet increase over time? We started this experiment 2 weeks ago and it seems like as time goes on, Jay's having increasing strong (negative) reactions to the same amount of Sinemet... so wondering if that means we should lower? As of today, when he takes Sinemet he starts crashing which is bizarre to me... I guess that's another question...
5. Have you ever heard of being "over" with L-Dopa looking much the same as being "under"... meaning strong symptoms... any good way to tell if someone is over vs under? That would be a huge help!
You can edit your post using the pulldown menu at the bottom of the post. But if you have a new question I would just start a new post.
I prefer ER because it works better for me. This varies from one individual to another.
Sorry, I do not know what multiplier to apply when adding carbidopa to levodopa. I think 25 mg is a good amount of carbidopa to add to each dose of mucuna, at least for the first few doses during the course of the day.
If he is having increasing strong (negative) reactions to the same amount of Sinemet I agree that lowering would be in order.
>Have you ever heard of being "over" with L-Dopa looking much the same as being "under".
The way to tell whether adverse reactions are due to too much or too little is to look at the timing of the reaction in relation to the timing of the medication.
Thanks! One last follow-up... can you help me understand why ER works better for you? We're trying both right now and it seems pretty hotly debated topic so I'm curious what you prefer?
I am doing the same thing for my WWP. I have very gradually, over a period of around 3 months, weaned her off the 7 pills of C/L that she was taking and replaced this with Mucuna. She has now been totally off C/L for about 2 weeks and having 6 Mucuna pills a day.
Carbidopa (Lodosyn), without the Levodopa helps in making Mucuna more efficient but as this is not available on its own in South Africa I am giving her Matcha tea as this is said to also aid the Mucuna penetrate the BBB.
Matcha is from the green tea family, only a lot more potent than ordinary green tea.
It's early days but so far, she seems to have tolerated the change well as far as her motor symptoms go. She used to have hallucinations and delusions and these have now stopped.
Unfortunately, over the past several months , she has developed dementia which may have been partially caused by the synthetic C/L side effects. Due to this, I have also started giving her Lion's Mane and hope to have encouraging news to report in the coming weeks and months.
All you can do is work with the dosage and adjust until you find what works. Everyone’s body is different. You know your body better than the doctor. Nine years diagnosed. I did the opposite. I started on CL my second year. I’m very sensitive to pharmaceuticals with side effects of OH and dystonia so I started on Mucuna 3 yrs ago and reduced my CL from 4-5 tab daily to 1 1/2 with 1/16tsp of Mucuna. It worked for the most part, Regardless any form of l-dopa gives me dystonia wear off after 2 hours . I learned Pickleball and it helps my PD. The Extreme heat here in AZ hit hard and I started regressing playing outside 5:30 AM The mucuna wears off quickly. I’m at a loss as you are but the powder is much more healthy for me. I have no other medical issues except PD. I use Nutivita brand powder l-dopa
Hi and thanks for responding... couple follow ups.
1. I'm not familiar with the term OH as a side effect... what does that mean?
2. To confirm, you currently take 1.5 taps CL with the Mucuna? Do you know how much L-Dopa is in the 1/16th tsp of Mucuna? (We use a scale and work in grams.) How do you split up your doses during the day?
3. I'm especially curious about the dystonia wear off... can you describe what happens for you? I ask because Jay's wear off doesn't look like anyone else's and we haven't been able to figure out what's happening... where others kind of ramp down, Jay gets very ramped up... arms and legs kind of thrash around and forearms are extremely cramped. His PD friends describe wearing off as a more gradual time of symptoms returning... that hasn't been our experience... but we're trying to get there!
The thrashing and cramping most likely is dyskinesia which means he is getting too much Levadopa so maybe lower the c/l that you’re adding to the mucuna. Just curious about what the problems were when he was taking mucuna only, that led you to add the c/l
Also, after thinking about it more, the mucuna could be too much now with the addition of the C/l so finding the right balance with trial and error sounds like the answer which I know will not be easy.
OH is orthostatic hypertension, My blood pressure drops. CL alone causes this along with heart palpitations and dystonic wear off. OH ceased when I added mucuna . My current dosage is 1/4 tab 25/100 CL and 1/16 tsp every 2.5-3hrs as needed. The wear off is much quicker with mucuna . If I increase mucuna I get nauseous so I have to take small dose. It is strong. I have levodopa induced dystonia. When I don’t take it, I have bradykinesia, but not dystonia. it’s hard for me to take any meds. My body is so sensitive to it. They want me to get dbs .
Hi! My husband, James, is 59 and was diagnosed with Parkinson's in 2015. He doesn’t have tremors but has a terrible time with stiffness, rigidity, freezing, and pain.
He has used Zandopa for approximately 6 years.
He was taking C/L 25/100 every 2 hours, but he had very little on time, if any.
After research, we decided to try Zandopa. Zandopa has been a lifesaver for him (although the taste is horrible). Without it, I truly don’t even know if he would be alive.
James uses:
Zandopa Powder (we purchase on Amazon) every 1 1/2 - 2 hours. We had to experiment to find the right dose. We settled at .142 ounces of Zandopa.
I have a small kitchen scale that I weigh every single dose. I also have a small sifter that I sift the powder because it has hard little chunks in it (I don’t know what they are but they made swallowing the powder difficult).
I mix the Zandopa with cold water and James chugs it quickly. I found small cups on Amazon that don’t leak.
He also adds at the same time, 1/2 tablet of 25/100 C/L. This prevents the nauseousness from the L-dopa in the Zandopa and also seems to help in general with the extra Levodopa.
I know everyone is different and what works for one person doesn’t work for someone else. But this is what works for James.
there is a Facebook group on mucuna . People there are very knowledgeable. If taking sinemet with mucuna you need to figure out total amount of ldopa you are currently getting. Then you want your combo to equal that . The c/l reduces the mucuna by 1/2. So if let’s say you are getting 100mg of ldopa from your mucuna alone then you add in 1/2 c/l 25/100 . Now you are getting 50mg ldopa from c/l so you need 50 mg ldopa from mucuna. You need to take 100mg of mucuna to get 50mg of ldopa to brain when taking with c/l.
If taking mucuna alone you would need 400mg ldopa from mucuna to equal 100mg ldopa getting to brain.
Hope I didn’t totally confuse you. My husband takes just mucuna in the morning and now for the rest of the time he added in a little c/l.
I took madopar which gave me dreadful diahorrea then sinemet which gave me gut pain. I changed to Mucana about a year ago (after 6 yrs diagnosis) I find mucana fantastic. It works faster than than the meds but I also take 1/2 Kinsone 100/25 x 4 times a day.
It is trial and error but well worth persisting . I do still get rigidity & pain but not as much as before.
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