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


#105

Hello. I’ve been reading through this thread with interest. My dad was diagnosed in October 2017. His main symptoms are slight tremor on left side, flat footed on left side and he suffers a bit with anxiety. He’s not on any meds yet and cycles and goes to gym. Every time he sees his Consultant he suggests dad starts medication. We saw him a couple of weeks ago and he reluctantly left with medication. However, after reading the possible side effects, he decided he wants to wait a bit longer. I’m supporting him 100% and am interested in other options. Those of you that take natural forms of levodopa, like mucuna pruriens, where is the safest place to buy these? How do you know how much to take? Thank you


#106

You have to follow your own instinct when it comes to taking meds. My problem with the meds on offer for Parkie Poopers is that the meds address the symptom (tremor) but not the cause of the disease and you pay for it in the end if/when the contra-indications (in my way of thinking more accurately defined as: "medically induced alternative illnesses) catch up with you. Like your Dad, I prefer to use more natural means of addressing medical issues rather than prop up the bloated pill industry.
I have been taking mucuna pruriens in the form of Zandopa (made in India by a company called Zandu) and have found that it gives me the same limited protection I was getting from Madopar but without any apparent “side-effects” . It doesn’t eliminate the tremor but it helps. I buy it from www.ayurvedaforall.com. They offer the best deal I have found and it arrives usually within 9 days. I started on 8gms per day, which wasn’t enough. I am currently on 20gms twice per day (12 hrs apart). There is little guidance on “correct” dosage but I have read that the body seems to tolerate it well even at high doses.
As regards Anxiety - I find that, if I get anxious, my tremor gets worse. Or is it vice versa? Again, I do not want to take any chemical cudgel to address the anxiety issue. Instead I try to think very positively THE WHOLE TIME. This seems to work. Keeping relaxed, taking lots of exercise and monitoring my sleep all helps together with musical appreciation activities. I am currently consulting a nutritional therapist to address digestive issues. This is going well (no more constipation) and my hope is that, if I can get my digestive system completely back to normal, It might do a better job of feeding my neural system with the chemicals it needs to inhibit further damage. I hope this is helpful to you. Hang in there!


#107

Hi @mwheeler83,

I understand your Dad’s concern about the potential side effects to his medication, however, it’s really important that he follows his GP’s advice as his decision not to take it could have an adverse affect on his health. Regarding natural medication, we’ve explored this topic on our blog which you may want to read here - https://medium.com/parkinsons-uk/could-we-treat-parkinsons-naturally-fea64ee8e96c

If you have any further questions, please feel free to contact our helpline on 0808 800 0303 or email us at [email protected].

I hope you find this helpful.

Best wishes,
Reah


#108

Thank you. That is so helpful. Will pass this on to my dad. Best wishes.


#109

Thank you so much. Have discussed it with my dad and we’re going to give it a go from the website you suggested. It’s always nerve wracking buying online so it’s great to have a recommendation from someone in a similar situation. Hope you are well.


#110

You might also like to have a peak at Dr Laurie Mischley’s book:
https://www.amazon.com/Natural-Therapies-Parkinsons-Disease-Mischley/dp/1603810153
It uses plain language, is written by an experienced naturpathic doctor (a recognised qualification in the USA). She doesn’t rubbish standard medical practice but has plenty of ideas about self help in a truly complementary manner. She is a PD specialist and firmly rejects the idea that PD is unstoppable. Enjoy JCPB


#111

Take control is the same phrase that Steve Ford often uses (MD of Parkinson UK). To take control you must be well informed, But meds are only a part of the puzzle.I agree with the point made earlier Mucuna is made by companies that are not regulated. You need roughly 4 times more mucuna to get same effect as 100 mg of Sinemet (because sinement has +25 of cardiodopa which helps protect the levadopa). I think mucuna is just part of a much bigger take control picture. Do read this. It may help put everything into perspective. Good luck


#112

Hi Twinks

I hope you are keeping well. I read your post on mucuna with interest.

I know it is a while ago since you posted about your meds and using mucuna. I have just started meds but would prefer to just use macula.
But! It is so confusing as to how much to take and I can’t seem to find a low tablet form that delivers to uk.
How are you now? Are you still on macuna

Thank you take care
Steph