Very interesting posts.
Can you tell me how long it took for the MP to help? Was it one to two weeks?
I have been taking for almost a week and wondering if I should increase the dose yet or wait a few more days to see if the dose is right for me
Many thanks
Steph
Hi Steph22
I would say that my tremor was lessoned within about an hour of first taking mucuna prurines. I now take one capsule of MP, three times a day (plus one Madapor 25/100 three times a day) which works very well at supressing my tremors but I have to say that neither MP nor Madapor has helped improve my weak and aching legs. I have tried increasing the dose but to no avail. I still think that MP has benefits and fewer side-effects than Madapor, so I’ll see how it works in the longer term.
Hi Borg3of21
Thank you for your reply, I have ordered some powder from detox trading and plan to make capsules
They suggest 1/4 tsp a day which seems quite a high dose?
I’m hoping the MP will help to avoid increasing Madopar too soon.
Steph
Hi again Steph22
I think you are right in giving MP a go. It has many health benefits in addition to delivering L-dopa. Start on a low dose for about a week or so, then up the dose if you wish. I think the suggested dose of the MP powder from Detox Trading of a quarter of a tablespoonful should be fine. If you are making up your own capsules, that might equate to two or three ‘00’ sized capsules per dose. Alternatively you could just mix with a little water and gulp it down (it’s not too unpleasant).
From the reading I have done on MP, it seems its chief benefits stem from the very large mix of compounds present in MP, which effectively serve to avoid giving rise to side effects and any tendency to stop working, as can be the case with synthetic l-dopa. It can be taken alongside madapor, benildopa etc. So I would suggest you supplement any existing medication by adding in MP starting with a low dose at first then see how you go.
I hope it works well for you!
Hello,
Thank you so much for your message. It is really helpful to hear your comments. I have read so much,that I think I am on overload. So I am going to start with a simple plan.
Thank you again for taking the time to reply
Steph
Hi Borg3of21
Thanks for the tip about mucuna being available from Detox Trading. I have just placed an order with them. Price is comparable with that obtained direct from India but timescale for delivery is superior (2 weeks from India!). It will be interesting to compare quality and effects. I also take co-Q20 but I note that research into its effects seems to be grinding to a halt. I don’t know the reason but I would guess its because there is no money in it for Big Pharma.
For dietary advice I have been an enthusiastic customer of EntireWellbeing.com. I have been following their Paleo diet now for 22 weeks and it has done wonders for my digestive system. I have stopped losing weight and feel much more positive about myself. The diet means hard work in the kitchen (no manufactured stuff - only fresh, natural and organic fruit veg, meat and fish in good quantities. No junk AT ALL. But the effect on digestive performance is amazing.
Another good tip I have been given is to take cold showers - as long as you can stand it! I use the plunge pool at my local gym or switch my home shower from hot to a final douching in cold water. It not only stimulates my system as a whole but my tremor goes to sleep until I warm up again. So it seems to work as a direct exercising agent for the neural system. Go on - try it!!!
JCPB
Hi JCPB
I haven’t ever ordered mucuna from India but I think the UK supplier do supply a good product, that is to say it works for me.
Did you mean co-Q10? I haven’t heard of Q20.
As regards cold showers, I have read how it’s a vagus nerve stimulent. I find the sudden shock of cold water too much to handle (I must be something of a wimp). What I do find helpful is a pain relief pen fired a few times on or just below my navel. The device I use is called a ‘Pain Gone’ pen, which I obtained from an eBay supplier. It’s much less of a shock than a cold shower but is said to have a similiar effect. I’m also trying out low dose nicotine to reduce the most unpleasant symptoms for me which is weak and aching legs. It’s only day two of my experiment - one niquitin lozenge (1.5mg) twice a day, but I read that some PwP find nicotin helpful. I hope it works for me!
Hi Borg3of21
Yes I did mean co-Q10. Sorry.
It’s interesting how PD can have such a wide variety of different symptoms for different folks. It really brings home the message that each individual person has to find their own way of dealing with the disease. I like much of what you have described as your way of dealing with it. It closely resembles my own philosophy and practice but I think I will stick with my cold showers!
Cheers
JCPB
Hi JCPB
I agree with you that we all have to find what does and doesn’t work for us all individually. Progress is hard to judge from the mix of good days and bad days and the trying out of this or that therepy, supplement etc. I do believe it’s important to ‘know the enemy’, so I think it’s vital to do the research then formulate a plan of attack - and continuously revise it as one goes. Just following the advice of one’s neurologist, without question or investigation is hardly likely to bring any benefits. My neurologist hadn’t heard of mucuna, had nothing to say about Q10 or any other supplement, or how supporting and enhancing mitochondria health might help allieviate some symptoms. All he offered at my last visit was to up the benildopa from three a day to four a day, and come back in six months! No, that’s far too simplistic and short-sighted way of making any headway with this complex and personal condition.
Hi @Borg3of21,
I see there has been some conversation about the ‘Pain Gone’ pen which is great. However, I just wanted to chime in quickly, I can see that the item has been given medical device status, but I would advise you to seek advice from a clinician before purchasing a product such as this to ascertain its suitability to you.
Hope you find my 2 pence useful and if you have any questions, feel free to give us a quick call via our helpline on 0808 800 0303.
Best wishes,
Reah
Hi, I am glad to connect and hear about your experience with MP.
My mum is 83yo and diagnose with PD since 2011. Her dosage for sinmet had been increasing over time as that had been the conventional protocol by her neurologist. Studies had shown that increasing sinmet will have wear out effect and increased dyskinesia.
In the last 3 years, I had taken a similar path that you had taken ie conventional medication and MP.
We have experimented and in fact she is functionally well with the following replacement. Sinmet 250/50 can be replaced with MP 350mg LD and 50 mg 5-HTP (avail in capsule). Since MP metabolised in the stomach easier that sinemet and could reduce the dose of dopamine to the brain it is best to have it 30mins before or after meals. 5-HTP helps as we need to balance the three chemicals in the brain. A boast of dopamine without the other two going well will give her a nauseating feeling.
Hope this helps. I am still reading and researching and hope to learn more on how to care for my mum. Has others gone through the same journey?
Hi JohnnyW
Thanks for this. Could you help me here please? I guess that “MP” is Mucuna Pruriens but “5-HTP” and “350mg LD” are new to me. Please enlighten me.
Thanks JCPB
Hi JCPB,
MP 350mg LD = Mucuna Pruriens at 350mg Levodopa.
5-HTP = 5-hydroxytryptophan. This supplement is a precursor to Serotonin for the brain.
The drug sinemet it is a combination of Levodopa and Carbidopa. Carbidopa only purpose is to make Levodopa palitable. If one takes only Levodopa (which was the case pre 1975, before sinemet was developed), patient will feel nauseous and often feel like vomiting. After 1975 sinemet was developed. This drug is named sinemet as “sin” in latin means “no”; “met” means “vomit”. It is no surprise that the drug mean “no vomit”. Carbidopa main purpose is to stop the nauseating feeling. But the long term side effect of carbidopa needs investigation. Interestingly since 1975 the increase of dyskinesia in PD had drastically increased. Some research suggest it is the effect of long term carbidopa as it reduces vitamin B6. People with deficient vit b6 have the same symptoms as PD.
5-htp makes increased levodopa palitable as it balances the serotonin level in the brain, and thus no nauseating feeling.
My mum also takes vit b6 supplement.
Hope this helps.
Hello,
I hope you are keeping well. I thought you may be interested in my recent findings. I have been looking at the different strengths of Mucuna in the various products. The organic powders are not tested for amounts but I have been told by a company this is usually around 4% as opposed to the extract powders which can vary from 98% to 40%. Discussing this with my neurologist he advised that for a therapeutic dose; an amount of up to 2grams 3 times a day would be required. I am going to try a product from nutrivitashop.com that is popular on other forums, this is 98% l dopa with an 1/8 tsp being approx 500mg.
Best wishes Steph
Further to my post above and a bit more reading I’m going to stay with the detox trading MP. As has been mentioned it has other elements which I’m sure are beneficial and the high dose extract seems a bit scary!
Best wishes
Hi,
I’ve just started taking BIOVEA macuna dopa as was scared about the side effects of the Madopar I was prescribed. I’ve been building it up slowly,one capsule has 100mg of L-DOPA and I’m on 3 per day now. Not sure what to expect or how high I should up the dose to. Any thoughts?
Hi Marioka,
Welcome to the forum!
We hope you find comfort and knowledge amongst your fellow members.
All the best,
Elan
Moderation Team
What were the side effects? There are a few other medications your neurologist can prescribe. What dose of Madopar had a beneficial effect on your Parkinson’s symptoms?
Hi @Marioka,
Yes, welcome to the forum.
There has been a lot of conversation about Macuna Prurines on the forum from some of our members, who have shared their experience with it. There is one particular thread that stands out which you may find useful and you can find it here - Macuna Pruiriens Long Term.
Additionally, you can always give us a call via our helpline and speak to one of our members about this in more details. Feel free to give us a call on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm or email us at [email protected].
I hope you find this helpful.
Best wishes,
Reah
Forum Community Manager
I suggest you read ‘Mucuna versus Parkinson’ ISBN 9781500938116. It gives you the most comprehensive analysis I have found on all aspects .
Jcpb
