Going it alone


#101

Thanks for your reply Twinks, my wife takes 125mgs 4 times a day. She is seeing her consultant on the 2nd August, maybe a change of meds may help.

                          Billy

 


#102

Hi Twinks,
You must be honest with your nurse and neurologist, as much in the interests of your own safety as anything else. Mucuna Pruriens (which I take myself) interacts badly with some medications that might be prescribed to you for other reasons. The PD nurse assigned to me is disappointed but is tolerant and understands my decision to come off Madopar. It is absolutely right to take a proper interest in your medication and to weigh up the pro’s and con’s of different options. But be prepared to defend your decision and work with the NHS where possible. We PD folk are living in a minefield that no-one fully understands. None of us has the same symptoms and no-one has identified the root causes. You are entitled to work it out for yourself but remember that the neurologist and PD Nursse are trying to help.It’s best to have them on your side. Cheers John


#103

Hi John
I read your post with great interest. I note you say you take Mucuna Pruriens can I ask if you take any NHS meds with that or any amino acids. My reason for asking is that I currently am only on Mucuna Pruriens and am researching adding amino acids. I was on NHS meds for 4 years . I would be grateful for your comments regards Minky


#104

Hi Minky
I am not currently taking any NHS meds and have not researched amino acids w.r.t. Mucuna interaction. When I was first diagnosed with PD I found a good source of ldopa in a Spanish product called AtreMorine. It was very effective at damping down my tremor but too expensive for me to use on a permanent basis (£75 per week on minimum dosage!). So I agreed reluctantly to go onto Madopar from Nov 2017. This gave me some protection but only if taken at double strength and refreshed every 3 hours. I suffered slight queasiness some indigestion and felt anxious, which was not like me. Things came to a head when, stumbling across mucuna pruriens in the form of Zandopa, I also fell foul of the poorly implemented NHS 28-day rule. I became very frustrated and rather lost my patience with the NHS. So, in June 2018 I abandoned Madopar and started using Zandopa powder. After a little experimentation I have settled on one 20gm dose in water early in the day and that seems to have the same effect on my tremor but with no detectable ill-effects. Unlike the NHS, Zandopa suppliers in India seem to be able to deliver their product reliably.
I should add that, after much research, I am majoring on gut performance improvement as being the best approach to possibly stopping PD in its tracks. So I have been gluten-free and lactic-free for several months with encouraging though fragile improvements in digestive performance. My weight, which had been dropping off me at a steady rate, is currently stable. I’m getting by and feel in better control of my condition.
I have good relationships with my PD nurse and neurologist and have been entirely honest with them. I value their inputs and experience but recognize the limits of the NHS approach which focuses on addressing symptoms rather than causes. I figure that, as no-one has yet identified the root cause/s of PD, my approach is as valid as anyone else’s in trying to find a way through the fog! Cheers
John