Going it alone


#61

Hi Tabbycat,

I have 2 different types, capsules and tablets which are supposed to contain the whole plant, but to be honest, I'm not getting much result from either. Initially, I thought I was, but I'm being quite cautious and probably not taking enough. It's true that I feel more alert and drug free, but my movement and muscle control has not improved.

I am thinking of getting the powdered form from Indigo Herbs of Glastonbury. I emailed them to find out what their powders contain and they said they use the bean, the leaf, the bark and root etc.

I'm going to carry on experimenting, until I get some relief though. Good luck to you!

Twinks.


#62

hi Twinks

the stress you are under re Rose will not be helping your symptoms, so you'll need to give it all extra time to work!

best wishes

S


#63

I started taking 250mg twice a day on Saturday. I think it's improved my mood, not sure about my symptoms. But I just wondered about the seed/bean extract thing and which was best.


#64

Well, the seed is the bean itself and everything I've read says that the best results come from using the whole of the plant, as Indigo Herbs do.......roots and all.

Are you taking any other meds. with it? And how and when are you taking it twice a day?


#65

evening tabbycat ,twinks . im thinking extract of bean but to be honest ,im not sure, ill have a look .hopefully as twinks says they use the whole plant ? ill let you know .


#66

Twinks, I take it in the morning just before breakfast and again in the evening before dinner. 

I also take COQ10 two or three times a day, and 4mg a day of Ropinerol.


#67

Sorry Tabbycat, 250 mg of the powder? 

How expenseive is your Macuna per month?

Thanks!


#68

They're 250mg capsules of seed extract. I paid about £12 for 60 capsules.


#69

you probably already gave me the link to buy it, but what is again, please? 


#70

No, I didn't. But I get them from here: http://www.biovea.com/uk/product_detail.aspx?PID=3859&OS=244

 


#71

Hello,

We would encourage anyone with Parkinson’s who is thinking about trying mucuna to speak to their specialist or Parkinson’s nurse.

Mucuna beans (from the plant mucuna pruriens) provide a natural source of levodopa, which is a chemical building-block that your body converts into dopamine. It works in the same way as many conventional Parkinson's medications.

We also urge people to be cautious when buying supplements over the internet and be aware that they are not subjected to the same careful safety testing and monitoring as approved medical treatments.

You can read more about how supplements are regulated on the FDA website:
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm050803.htm#HowAreSupplementsRegulated
 

Thanks,

Joanne

Digital team


#72

 

Just to advise everyone that when I approached my PD nurse about Macuna Pruriens, she had never heard of them, she had look it up on Google. What does that say???? Is she a bit behind times or what???

Sheila


#73

Thank you Joanne for the advice and information.  I would willingly discuss taking Macuna Pruriens with ANY health professional, if I could find one to talk to about the subject!

As Sheila says, neurologists and PD nurses have either never heard of it, or just dismiss the whole idea of taking alternative supplements, out of hand. Many of us want the choice to decide for ourselves and are desperate for some expert advice from someone who can advise us properly about taking MC. Surely there must be some neurologist, somewhere who has looked into this. After all MC has been around for centuries and proved a very effective method of relieving symptoms of Parkinson's, in India.

I have spent hours trawling through information on the Internet, trying to find a reliable provider of Macuna. I always contact the manufacturer to get more information, before I buy the product. You need to know how much L-Dopa you are taking in each type of preparation.....be it powder, capsule or tablet.

I think it is scandalous that we cannot get proper help with this topic and have to experiment ourselves and pass on information to each other, as we do.

PLEASE find us an expert on Macuna Pruriens, somebody.

Twinks.

 


#74

Hi Twinks

One would think, in this age of internet and globalisation, that it would be possible to contact  India's top neurologist direct for advice! So, Google "india neurologist" and you will find some starting points .. .more hours of trawling. . .

S


#75

Super idea Supa!

I have found a Professor of Neurology in India, who had an article in The Lancet. In it she mentions alternative methods for PD. Her name is Madhuri Behari, but every time I try to send her an email, I'm told it's not been delivered. I'm sending it to madhuribehari@hotmail.com

Will keep trying, but if anyone can find an alternative email for her, please can you post on forum?

Thanks.

Twinks.


#76

Hi all I have put a post on the PUK facebook page to see if we can get some answers,

Here's Hoping.........................


#77

Is there anyone taking macuna pruriens in powder form and would mind describing the taste for me, please? 

 


#78

Well, I think I might have cracked it! After much experimenting with Macuna Pruriens tablets and capsules, (haven't tried the powder), I seem to have found the dosage that suits me. For the last 3 days, I have felt more like my old self again....happy, more energy, more movement, better posture, less pain. Of course it's early days and it might not last....but so far so good.

I have kept a daily record of doses taken and hope I'm doing this experiment in a responsible manner. It's my choice to do this and I'm not trying to influence others to try, in any way at all. 

However, I'm still trying to find someone who can give me more solid information about it's long term use and a good, reliable source from which to buy. 

Twinks.


#79

That's great news, Twinks, I really hope it lasts.


#80

Good morning Twinks .. im glad your doing well with the macuna pruriens ,ive been taking them but alongside meds , alls well , but by doing that im not sure if its the meds or m p working..keep up the good work .Have a good day ...