The doc increased my dosage from 1 to 1 1/2 pills of Sinemet three times a day. .
I start taking mucuna pruriens to lower dose of sinemet instead of increasing the sinemet dosage. Does anyone have a suggested dosage of mucuna pruriens to supplement 1 pill of sinemet 25/100 three times a day, in hopes of increasing mucuna pruriens gradually while decreasing sinemet? I also been taking Dr. Costantini's B1 therapy,1 B1 in the morning for 1 month, has not seemed to make much difference. I have a lot of Mucuna 15 % strong by Solay (50mg L-dopa) and Now(150 mg L-dopa). Can I combining and how.
I feel like I am swimming in a middle of the ocean...
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sudoku123
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I follow the Hinz protocol but substitute Marlowe’s Mucuna and tyrosine powders for theirs. I use his patented pills (more amino acids) . I was able to reduce my volumes by a third my using Vit B1. I’m using 7.3 g of Mucuna and10g of tyrosine twice a day. I’d suggest using a Dr to get started as it’s an individual dose. Doing well for two year so far. No on n off problems.
10 grams. It’s not just a couple pills type regimen. There’s some volumes involved . I was actually on a lighter dose than average before I cut it by a third. The volumes are the hardest part but I ended up just making a shakeout of it.
I was able to reduce my amino acid shakes by a third( skipped the last one of the day while on vacation) after starting Vit B1. Hadn’t planned to but excursions got in the way and I didn’t notice any difference.
I’ve used Barlowe’s 40% capsules consistently for over a year and take about 3 a day , sometimes less. I’m in the early stages nearing four years with PD. I usually take the first one the moment I wake up and actually often fall back to sleep for an hour then waking up ready to start my day. I don’t use C/L so can’t offer a comparison. I also take Thiamine at 1000 mg daily with 5 days off each month. A few other powders and supplements.
I have no side effects from it and find it very convenient. I don’t think it’s always consistent however, but what with this disease is?
You read somewhere to get off Thiamine for 5 days every month? I’m kind of winging it with my Thiamine starting at 2grams a day. Haven’t varied it as it’s allowed me ( I believe) to cut out 17.3 grams of other amino acids. Anything else I should know?
Hey Jaybird, in April I started B1 at 2000mg daily and it was smooth sailing until mid September. I saw Dr. C while in Italy and over a two month period found my new perfect dose of 1000mg daily but that wasn’t still correct until per his recommendation I add 5 days off each month.
I had played around with skipping days and alternating dose levels but his recommendation proved to be the most effective. Wish you luck too!
Thanks for the info. I can’t say I noticed a change taking it,just that it didn’t seem to matter if I missed one of my amino acid doses, which was mentally very freeing . I’ve always have had a hard time sensing any dose change that I try , unless it’s too much. I just go with the least stomach troubling dose that seems to allow me to get by. I don’t know if there’s are dose possible to eliminate any sense of Parkinson’s ? Is taking a break from it important? Thanks n have good holidays
Taking B1 breaks seems to provide further symptom relief. I didn’t seem to require breaks during the first 6 months on B1, however now I do, and it’s like hitting the reset button.
Yes! I take three eighths of a teaspoon or 1.1 grams of mucuna only. It lasts roughly four hours sometimes five. I usually take three doses a day sometimes 4 to help with sleeping. Unfortunately disciplined effort of what you eat when you eat is critical to the effectiveness of of the mucuna crossing the blood-brain barrier (bbb) and reaching the central nervous system. Meaning I take it before i eat. When the Macuna kicks in roughly 30 minutes I then eat. In the morning it works very well with my coffee but I use a little almond milk instead of regular milk because it has very little protein. I source my mucuna from nutrivitashop. Com. White powder form I believe they claim roughly 98 99% l-dopa. I buy the 250 gram bag 4 about $62 it's last 3-4 months. I have Parkinson's for about 10 years.
My neurologist who heads up Columbia Presbyterian Parkinson Center was extremely impressed with how I looked last week. He doesn't prescribe using mucuna but is supporting what I am doing.
We have an appointment there in February. John started the high dose thiamin with Doctor C three weeks ago. No change so far. Just hoping they will be open to this protocol. He is also ten years in. We are also working with a local dietician. His symptoms worsen with sinemet and I plan on asking about the mucina when we see him. Glad to hear that you are having good results.
Unfortunately you will most likely be on your own with the mucuna. In the eyes of the doctors it's considered a supplement and you won't find at least I haven't any doctors working with it. I'm assuming your local I'm on Long Island. Did John go to Italy to see doctor C? I haven't started a B-1 protocol but I am ready perhaps we can help each other?
We are actually in NJ. Dr Fahn was our doctor early on because John's case was very difficult. After 16 doctors, he was the only one to help give him some "normalcy" back in his life He has been pretty stable for the last five years so we continued in NJ and just had his prescription filled by a local neurologist. This summer I noticed a bit of decline and made an appointment to go back to Columbia Pres in February. Dr. Fahn was very open to new procedures and therapy back then. I am trusting that he will be open-minded when it comes to the high dose thiamin therapy as well. ..not too sure about the mucina, but I will bring him everything our dietician suggested.
I have been corresponding weekly with Dr Constantini and although I would love to take that trip...it's not in our cards right now. My friend's brother-in-law lives in Italy...newly diagnosed and has an appointment to see him. I will keep you posted... good luck on your end too!
Thank you, this is very helpful. I too have had PD for 10 plus yrs, diagnosed last yr., when shoulder rigidity, and other issues WORSENED, and began taking 2 SOLRAY MP 15 % LDOPA 3 X A DAY ( 100 MG TOTAL A DAY) 2/18 after trying regular meds. I also take 3 to 5 % MP chewables as needed, or for stressful times when I'm out ( Banyan Botanicals)
I did have a hard time figuring ut the right dosage because for the longest time MP was making me 'loopy', 'distant' like. I'm still adjusting the dose, but getting there.
Yes a thousand milligrams a day is what is printed on the side of the bag it says not to exceed 1000mg per day. I'm sure that's there to protect them. I can only tell you I started with 1/8 all the way up to 4/8 or half a teaspoon but finally settled in on 3/8 as an effective dose for me that last for approximately 4 hours.
I take Himalaya Mucuna. I take 4 tablets a day usually, two in the am, two around 1 pm, sometimes 1 around 5. I also take 1/2 tablet of carbidopa/levadopa in the morning and with the 1pm dose. I started Mucuna when I had to wait 5 months for a neuro appointment when I was first diagnosed in March 2013. I increased the dose until it felt like it was helping. I added the dopamine in 2014. I have not increased the dose. I also take Valerian for internal tremors and cannabis in the evening for tremors.
I had signs of PD at 47 years old but was diagnosed at 50. Didn't take any medicine until I was 55 Started taking CL 25 / 100 for about 6 months discovered mucuna made a one-week transition now 57 . I've been on the mucuna for about a year-and-a-half.
When I was diagnosed 50 years old I went on an exercise spree lost 75 pounds and was hiking all over the place. Fortunately I still hike. I think that had a lot to do with going so long without medicine
I take nutrivita 100% l-dopa from Mucuna pruriens 1/8 of a teaspoon 3 times a day with other herbs, 4 grams of B1 and a pinch of magnesium citrate. Works really well. Tremor dramatically reduced while on (almost non existent). Have been doing this for approximately 1 year (the B1 for 4 months). Dyskinesia is gone. Every now and then I take a sinemet 25/100
Quite a few members on HDT are reporting that in the 6 month to 18 month of being on HDT, they are finding some worsening of symptoms and apparently it is because a very slight downward adjustment in the B-1 dose is needed to get back on track.
If my memory serves me correctly, you are very close to being in that time range of HDT use. I am wondering if you have noticed even a minor worsening of symptoms on your 4 gram/day dose. Recently Roy, who is also at 4 grams / day found a worsening of symptoms. I think he has been on HDT slightly longer than you, but I was wondering how it is going for you?
I stopped taking B1 altogether for about a month, symptoms did get bad for that reason, but I’m doing 4 grams one day and 2 grams the next and so on. This is working well for me so far.
So you are essentially taking 3 grams of B-1 per day if you average it out. I was wondering if you tried 3 grams per day and if it worked the same as your current dose of alternating between 2 grams and 4 grams per day?
I was feeling discomfort on my right side behind my lower rib cage maybe my gallbladder so I thought my system needed a break that’s why I stopped and as soon as I did the next day walaa all gone. So I started at lower dose and it’s working so far. You know what though being off the B1 was awful symptoms came back rigidity, dyskinesia, fatigue, depression etc. But when I started back a week later everything is great again. Thanks Art
I take both currently, with the goal of eventually weaning off the Sinemet. Mucuna is nasty tasting stuff. Used to drink it in green tea, but now with fresh juiced beets, cucumber, pears, etc...much better!
Yes you’re right and the B1 even worse. I purchased a capsulator online and vegetarian capsules it’s very easy to do and saves you the trouble of having to rough drinking the powder.
if you are in the EU at one time or another you should try intramuscular injections. Ask those who do extreme sports such as free climbing, or extreme mountaineering.
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Will try out on dad.
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