Mucuna and other natural supplements advice please

[LondonPD]

Hi

I haven’t posted before. I am Carer to my husband who was diagnosed with PD in 2016 after being told for several years that he had essential tremor. Over the past year his motor and non motor symptoms have got worse. He does zoom PD Warrior 3 times a week, Beat boxing twice and other things too. Three weeks ago his hallucinations got very bad even during the day so we cut Sinemet Plus to 25/100 three times a day. The hallucinations have come back a bit.

Anxious not to up his Sinemet Plus again but equally concerned that his tremor is worse I am wondering and would like advice please about Mucuna as a more natural alternative. I do have Clean Mucuna L -Dopa 99% that I ordered off the web. Equally I would be happy to order other brands that I could get in the UK.

Should he take it with Sinnermet Plus or try it instead of one dose? I have read on here about taking it with Green Tea extract and that Mucuna makes some people feel sick.

Since reading other pieces on here I am trying to plan it so that he takes the Sinemet Plus plus away from food. Have I understand that correctly?

I am happy to add in any other useful supplements. He takes Mannitol x2 teaspoons a day, vitamin B complex, C and D. Fish oils, Q10 and Ginko. We do try to stick to a healthy largely plant based diet with fish and chicken Comments from those who have good experiences would be much appreciated. His neurologist is very good and advocates very strongly fir exercise but isn’t open to unproven natural ideas although we still try them. As many doctors his answer is usually more pharmacy.

[Cagey84]

Hi London PD - the levodopa in Sinemet is exactly the same as the levodopa in Mucuna. Sinemet has the advantage of containing carbidopa which delays the breakdown of levodopa. So with 99% Mucuna levodopa, to all intents and purposes you have levodopa.

Because of this I'd be very wary of making any dose adjustments without talking to the neurologist first.

[LondonPD in reply to Cagey84]

Thank you

[MBAnderson]

I agree with Gagey and wish to reiterate and emphasize his/her point that levodopa in Sinemet is identical to the levodopa and Mucuna, so if by 99% pure, you mean 99% levodopa, I'd be very careful about taking that especially in combination with Sinemet because he may getting more than he needs. (Levodopa in Mucuna is not better than levodopa Sinemet.)

And, keep in mind it is the rest of the plant that causes Mucuna to be more beneficial to some people, so were it me, I would take a brand that was in its most natural form which is around 5% l-dopa (give or take a percent or 2.)

Some on this forum have found certain brands of Mucuna they believe the dose of levodopa is precise and consistent.

[LondonPD in reply to MBAnderson]

Thank you

[park_bear]

Take a look at high-dose thiamine if you have not done so already

highdosethiamine.org/

[LondonPD in reply to park_bear]

Thank you park-bear . Your link to high dose thiamine is very interesting. Has it helped you and others. Can it work as well with supplement tablets and not injections? Very keen to learn more.

[park_bear in reply to LondonPD]

Yes I and many others take 500 mg capsules from Vitacost.

More discussion at this link:

healthunlocked.com/parkinso...

General site search for thiamine:

google.com/search?hl=en&as_...

[LondonPD in reply to park_bear]

Hi Park Bear

the Vitacost is out of stock but I can order Solgar which I know is a good make on Amazon here in the UK. Reading the notes you linked I think that I should start my husband (who weighs 192 lbs and has been diagnosed for 5 years ) on 3 grams a day. So 3x500mg before lunch and 3x500mg after lunch. Does that seem a sensible start?

Thank for your support.

[park_bear in reply to LondonPD]

I have not used the Solgar brand. It is my understanding they are hard tablets which are harder to swallow. Agree they are a reputable company.

Cannot claim special expertise on this. That said your approach seems reasonable.

[Despe]

Here is my husband's (diagnosed 3 years ago) protocol which works pretty good: 1/2 Sinemet with 2 capsules of Mucuna NOW three times a day. He also often skips Sinemet completely (one dose) and substitutes it with 2 Mucuna capsules NOW and 1/2 t Carbidopa. That works also good.

Mucuna NOW has 120mg Levodopa (2 capsules). I order it from Amazon.

Melatonin works wonders for hallucinations. If you enter "Melatonin" on the upper right corner "Search HealthUnlocked" you will find a lot of information on Melatonin. I would also recommend, based on my husband's experience, Magnesium--Magnesium is a must for everyone, but especially for PwP.

If you'd rather use 99% Mucuna, you have to add 1/2 t Carbidopa. Our MDS at Vanderbilt University was very knowledgeable on Mucuna and had no problem with my husband having Mucuna vs. Sinemet. He recommended though that he should take it with Carbidopa.

[docjleonard55 in reply to Despe]

Where do you get pure carbidopa?

[Despe in reply to docjleonard55]

Ask your doctor to prescribe it. It's not over the counter supplement.

[LondonPD in reply to Despe]

Thank you so much.

[Despe in reply to LondonPD]

You are very welcome. Hope I have helped based on my husband's experience.

[Despe]

Dr. Rafael Gonzalez, Neurologist:

mucunaparkinson.com/propert...

[janers in reply to Despe]

Excellent article! Thank you for posting. Personally, I put a teaspoon of natural Mucuna powder in my coffee in the morning, have a concentrated extract capsule mid morning and half a Sinemet tablet in the afternoon. I like trying combinations! My neurologist said the Mucuna has difficulty crossing the intestine barrier especially after eating, so that’s why I take the Sinemet after a meal.

[Despe in reply to janers]

Thank you. Either Sinemet or Mucuna has to be taken an hour before a meal or two hours after a meal to have an effect (cross the BBB). Putting your Mucuna in your coffee is an excellent way to take it. Actually my husband does the same, and it seems to work great.

[Cons10s]

MB and Cagey, I have a question I hope you can help with. If 99% ldopa is the exact same as Sinement. Why do I easily get 5 hours of on time from ldopa. I never hear that about Sinement unless I’ve just missed that. People usually claim 2-3.5 hours of on time.

Also an 1/4 teaspoon of 99% ldopa with binders and Carbadopa would make a much larger Sinement tablet, then what’s currently produced wouldn’t it? Thanks in advance.

For the poster.

I make my own capsules with a quarter spoon ldopa and then top off the capsule with a little Matcha green tea. They work great. Some days I take two and longer days I take 3 capsules. No side affects at all.

I’ve never had a full time tremor but the capsules eliminate the intermittent tremor and all my bradykinesia. You can’t even tell I have PD for the majority of the day.

PD since 2015.

Constance

[Despe in reply to Cons10s]

Hello, Constance!

We used to make our own Mucuna capsules, not anymore. Time consuming. . . Husband used to take Teavigo capsules (94% EGCG) with his homemade Mucuna capsules. He stopped it because we read that it can cause liver problems. The only time he has tremors is when he drives or exercises. Doing great the rest of the day except bradykinesia which is improved, but there is still room for improvement.

[Cagey84 in reply to Cons10s]

Hi Constance - I'm more used to using grams and milligrams than teaspoons, but if Google is right, then a 1/4 teaspoon is around 1g of levodopa. I hope this is wrong because 1g is an enormous dose, and probably explains why you get 5h of relief. Taken 2-3 times per day will give you off the chart levels of levodopa. I hope my calculation is wrong.

So, in one sense you're right, 1/4 teaspoon of 99% levodopa would need a larger tablet, as most Sinemet tablets have 100mg of levodopa. But - 100mg should be all you need per dose, the variable then is how many you take each day. Oh, and don't forget the carbidopa.....

[Cons10s in reply to Cagey84]

I have that 1/4 teaspoon is 580 milligrams, either way it’s more than 100 milligrams you mention. Are you sure that Sinement isn’t a synthetic version of ldopa with enhancers.

[Cagey84 in reply to Cons10s]

Sorry Constance, I forgot something - the levodopa in Mucuna is broken down faster and consequently it’s not 1:1 equivalent. I’ve seen 5:1 quoted as a ratio, although I’m not sure of the reference. So if you’re talking 580mg it’s not too far off. My mistake.

However, the levodopa in Sinemet and the levodopa in Mucuna are EXACTLY the same. It doesn’t matter whether it’s synthetic or extracted from a plant. Sinemet also contains carbidopa which delays the breakdown of levodopa and reduces nausea.

[Spencer53]

Exercise is the most powerful aid for pwp. Walking is very good the best exercise is to do one that you like. Spencer53 posted protocol for hwp - diagnosed in 2015 not on meds. We just learned through a nutritionist yesterday based on our case to have more meat in order for hwp muscles to strengthen. Green Tea itself offers benefit. Hwp is taking an Organic Mucuna powder which is added to his smoothie.

[LondonPD in reply to Spencer53]

Thanks. How much Mucuna powder does he use.. Green tea powder in same juice? No meds other than that ?

[MBAnderson]

See chartist new thread on Mucuna. Very informative.

[LondonPD]

Thank you