Going it alone


#81

Thank you Tabbycat and Smudger.

Still full of energy today, so been gardening all morning. Granted, a bit slower than I would like, but not getting as frustrated as before. So that means less shouting and swearing.......which is good for those around me!

Hope you both enjoy the rest of the day and keep smiling.

Twinks. 


#82

I stopped taking mine because I felt a bit odd - but possibly it was just the usual rollercoaster of PD so I'm going to try again.


#83

Morning Tabbycat, yes it made me feel a bit odd, while I was still taking Ropinirole. Once I had weaned myself off it and waited a couple of weeks for it to be completely out of my system, the Macuna seemed to work OK. However, I still take 10mg. Elderpryl in 2 separate doses. The research I did mentioned it was alright taking it with an MAO-B inhibitor, but not a dopamine agonist like Ropinirole.


#84

Thanks for that, Twinks. Do you have a link to the research that mentions taking it with DAs?


#85

Hi Twinks

someone was looking for a neurologist  in the UK with knowledge of Mucuna Pruriens. I have come across  and have mentioned it before, an article  about a study of MP, published in 2004 on pubmed site where among the list of contributors the name of professor Andrew J. Lees crops up. There is Wikipedia info  about him too. He has published a lot........ Seems quite approachable too? This might be of interest.


#86

So I've been taking the Macuna powder for about a month. I can' say that I notice a difference. I'm not on any official meds so I know they can't be affecting me. 

I'm not convinced about my dosage or the powder v tablet debate. 

Experiences/thoughts welcome. 


#87

Haven't been on the forum for a few days, so just catching up. Thanks Kate for that name. I'll look him up in a bit and try to contact him. Most kind of you.

Like you, HughsNewbie, I've been taking Macuna Pruriens for just over a month. At first I thought it was working, but now, not so sure. Seem to have goodish days and bad days, but never much energy and my walking gets poorer. I'm taking 2 capsules twice a day. I got these capsules from a reputable supplier in India....came with proper documentation and stamp of approval by standards board. I emailed the manufacturers to ask when and how many capsules I should take for Parkinson's. They suggested 2 capsules, after food taken with milk. Up until then, all the info I'd read, said to take them half an hour before food, with a cup of green tea. So, I've tried both methods, but can't say I've noticed much difference. As you say, don't really know what dosage we need. Still experimenting though, as my head feels a lot clearer than when I was on conventional meds.

Will try to find out more from this Andrew J. Lees and report back.

Twinks.


#88

When I took it, it definitely had an effect - just not the one I wanted!

Twinks, which standards board approved it? I'm a bit sceptical about these things, they can easily be made up.

 


#89

Hi Tabbycat,

Like you, I'm very wary of claims on products. The MP capsules I've been taking are from indianherbstore, which seems a reputable, well established company in India. The ingredients are 100% natural and have the GMP (good manufacturing practice) and ISO ( international organisation for standardisation) seal of approval. I did a lot of research before opting for these. I also have the tablets from Mountain Fresh in Lancashire, which is also GMP approved. Both lots are 500mg.

In answer to your previous post, I don't seem to be able to find the link about not taking MP with dopamine agonists.....sorry. I stopped taking Ropinirole, as it messed with my head too much, but still take the dopamine inhibitor, Elderpryl.

My main problem is bad posture and walking, which causes chronic back pain and general lack of energy. I've just ordered a back and shoulder brace, to see if that helps.

You don't say what effect the MP had on you.....do tell!!

I'm not giving up on the Macuna yet, as my head is a lot clearer and I'm sleeping so much better.


#90

MP seemed to make my tremor a lot worse and I felt shakey and uncomfortable (well, more so than usual!). I only took it for three or four days so I can't be sure it was the MP - it might have been all in my mind because I was slightly worried about taking it with Ropinerol.

I think herbal medicine needs to be taken for a while, so as long as it's not having any bad side effects you're probably right to keep taking it for a while.


#91

Hello Kev,  

Good to know that we think on similar lines! I'm not totally against conventional meds. and obviously if there was a cure, I'd take it willingly.

Since I last posted on here, I have come off all meds., but still experimenting with the Mucuna (which I seemed to have spelt wrongly, all through this thread!). I'm giving myself 6 months and keeping notes on how things are going. So far I've tried capsules, tablets and powder form....before food, after food, with green tea, with milk and also different dosages. I've given time for each type to have a chance to work, before trying something else. Some days the Mucuna Pruriens works better than others, but even though my head feels a lot clearer and I'm in full control, my symptoms, on the whole, seem no better.

I'm also looking at going gluten free, as I think the food we eat plays a bigger part in PD than we are told.

Another interesting area I'm researching is a non-invasive ultrasound treatment, called Exablate Neuro by Insightec for neurology. It is having excellent results in Italy, Spain, Switzerland and Israel. It is replacing DBS, so why are we not performing this over here, I ask myself? 

Oh well, I suppose we each do the best we can on a day to day basis. Never give up hope.

All the best to you Kev and everyone else.

Twinks

 


#92

Well, after all my protestations about conventional meds. and completing a 6 month experiment with Mucuna Pruriens, (natural Levadopa), I have finally succumbed!!

Now taking Madopar and 10mg. Selegiline and have to say, I feel absolutely great! Gradually increasing the dose to 6 capsules of Madopar a day, (300mg.) 

How long will this state of affairs last, I ask myself? I suppose the answer is, 'how long is a piece of string?' Do others on Madopar manage well and what happens after 5yrs. when it starts to have less effect? I'm a lively 67yr. old at the moment and reckon by the time I'm 72, there'll still be live in the old bitch yet!!

Twinks.


#93

Thanks for reminding me, Kev

Green lipped mussel extract is fantastic for joint pain. My OH takes it when his arthritis is particularly bad, but I'd forgotten about it. 

I've just changed meds and I'm having terrible joint pain during the night and, like you, first thing in the morning so I'm going to try this for a couple of weeks.


#94

Let us know how you get on, Kev.

I took one yesterday and another this morning and I'm sure I'm feeling a little better already. 


#95

Hi Twinks I am on Madopor 10 tablets per day at 62.5 mg when i first started them the dosage would last 4hrs i year later 3.5 hrs another year later 3 hrs an so on and so on. Now they have added Entacpone to my mix on a really really good day i can get 6.5 hrs out of one dose Entacpone lengthens the life of the Madopar. So Just see how you go my lovely.

 

BB xxx


#96

Just read your post BB. HOw are you doing? 


#97

Hi Twinks,

increasing to 6 capsules of Madopar (300mg), so I presume these are 62,5 mg capsules, each containing 50 mg of levodopa + 12,5 mg benserazide. How much are you  on now? Why increasing if you feel great? I know that the recommendation is 3 times 125 mg a day as starter dosiis. This is because you need at least 70 mg of benserazide a day  for optimum absorption. I wanted to start really low and increase really slow (following the "go low, go slow" rule) and started on 3 times a day 62,5 mg Sinemet (= 50mgr levodopa + 12,5 mg carbidopa per tablet), even though the recommendation was double the dose to get the benefit of the carbidopa contents (in your case with Madopar this would be the Benserazide)

The low dose did work for almost a year., I increased then with adding 0ne tablet first, making the total levodopa intake 200 mg/day.in 4 doses..

Now , after 15 years of taking a DA (Mirapexin) plus ten years on Sinemet  I have now arrived at the more difficult times PD throws at most of us, with occasional freezing and unreliable "on" times. 

And, I am now 72!  When The pills work, I feel 100% and can be lively, energetiic.No-one can predict how long you will be doing well, or when, if ever, you will  start getting dyskinesia.. You might have ten good years ahead of you, you might even become a sprightly 82yearv old. Good luck! Kate


#98

Thanks for everyone's input....am gradually adjusting dosage. Now taking 300mg. Madopar in 3 separate doses, as prescribed. ( Yes Kate, they're the 50mg/12.5mg. capsules). Staying lower didn't make me feel great all the time, although some days were better than others. And yes, BB, they seem to be effective for 4hrs., so I tend to take them at 8am., 12 noon and 4pm. and eat half an hour to a hour later, so the dopamine gets to my brain and starts working. Just have to see how long this continues to help. That's the trouble with PD, we all react differently to the meds., so no-one can tell you exactly how you're going to respond. Good to hear other people's thoughts though......much appreciated.

Twinks.


#99

My wife is on sinemet it has stopped a shake she had in her right hand and a inner tremor she had. Her biggest problem for a very long time now has been tiredness everything she does is such a chore. Does any one know of any medication that can help her ?

                       Taa Billy


#100

Hi Billywhizz,

How long has your wife been on Sinemet and what dose is she taking? I seem to be less tired and have more energy, since going on the Madopar. Perhaps a change of meds. might be the answer. My biggest problem is back pain. Mind you, I'm nearly 6' tall, so everything I do, involves bending over.......washing up, brushing teeth, cleaning the house etc. Still get tired sometimes. Have a word with her neuro or PD nurse.

Hope she can get some help.

Twinks.