Need Guidance Transitioning from Siment t... - Cure Parkinson's

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Need Guidance Transitioning from Siment to Mununa

Joy_gitt profile image
8 Replies

 My amazing dad with PD for 18 years , let me say he is my hero, along with all of you fighting the good fight for your health against this terrible disease!

My regret is not searching for natural options for him sooner 🥲 think they we’re out there for him

until I found you and all these amazing opportunities for hope and healing for my precious Daddy

we have started HDTT about 6 weeks now also added in a lot of the supplements I have heard from you guys are working for you

He has started having more and more delusions and side affect from the Siment & I want to change him to Macuna slowly as I have read it has less side effects and it’s just as effective if not more so

I read an very thorough article someone linked but It talked of taking the person off of Rasagiline “first” before starting Muncuna

His neurologist (although she didn’t recommend it for him) Gave us a protocol of switching out 1  of his 1/2 doses with the mucuna supplement a week at a time I believe the mucuna is 200mg and she prescribe carbodpia by it’s self (at my request) to take along with it (I read that makes it like a natural version of Siment

he currently take 1 ml of Rasagilne 1 in morning 9am - 1 100/25 Siment, 11am - 1/2 Siment, 12::30 am - 1/2 Siment, 2pm- 1 siment 3:30 - 1/2 siment 5- 1/2 7pm 1/2 Siment 9pm 1 Siment & 1 Donazipil (for memory With 10ml melatonin for sleep

my ???’s

1) do I take out the Rasagiline now when I’m just starting replacing 1/2 dose each week will that affect the Siment?

2) is the doctors protocol correct? And what about dosage is it equivalent?

Any advice would be so greatly appreciate he struggles enough and I don’t want to make anything worse for him! 🙏

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Joy_gitt
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8 Replies
Thal profile image
Thal

I've found mucuna too unpredictable.

Joy_gitt profile image
Joy_gitt in reply to Thal

did you try to replace your C/L with it or add it on top

I’m hoping to replace my dad has been on Siment for 17 yrs now and it causes him so many side affects

Thal profile image
Thal in reply to Joy_gitt

Tried both. Find it all complicated. Brands, quality, concentrations, dosages, absorption, mixing, inconveniences, etc.

PDFree profile image
PDFree

I’ve had a very good experience with mucuna and I take quite a lot of it for my PD. There are lots of posts on this site, I encourage you to look for them as well as doing your research on mucuna. I can’t advise you on tapering off/switching from sinemet to mucuna but I would recommend going slowly. There are a lot of variations and differences in quality in mucuna out there, seek out a good quality product.

Caro-1973 profile image
Caro-1973

Hi Joy! I belong to Mucuna Pruriens group in Argentina. In orden to avoid reactions, i humbly suggest you to give him not MP pills, but Mucuna beans smashed into powder ( I do it on my owne with a Coffee grinder). He must take the MP with a green tea. If that helps, there is no neeedto add Carbidope, the gree tea plays that role. 30 grammes MP is equal to 250mg C/L.First week you can replace 1/2 Sinemmet with 1 teaspoon of mucuna bean powder.

Pills are not 100% mucuna.

Kindle regards.

Carol

Joy_gitt profile image
Joy_gitt in reply to Caro-1973

thank you so much for that info I’ve read there are different forms and the capsules are all different percentages and it’s so confusing!

So where do you get the beans are they dried?

He is on simenet 100/25 so his half doses would be 50/12,5 what would he equivalent to that?

Do you have scale and you weight it?

What green tea do you use does it need to be fresh brewed?

Please I really need all the exact details u can give

My dad is 80 he is very sensitive and at this stage of the disease very unstable

So I want to be as careful as I can with doing this right so he doesn’t have any adverse reactions that would set him back further

I believe once I figure it out he will do well with this because it’s natural

Still trying to figure out his B1 dose it’s hard because he is so sensitive and 18yrs with Parkinson’s even though he has a DBS he is so unstable everyday is a new day we say we never know if it will be a good day or a bad day for him

My prayer is to get him more stabilized with more consistent good days so he has a better quality of life 🙏❤️

Caro-1973 profile image
Caro-1973

Kind not Kindle. Jajaja....Regards😁

Isthistheone profile image
Isthistheone

Joy l know you want to stabilize your Dad's condition. I'm not a MD and not an expert. Just a PWP about to start my 20th year in my Parkinson's journey. Get advice from your DOCTOR AND DO WHAT HE/SHE SAYS. YOUR DOCTOR IS A TRAINED MEDICAL PROFESSIONAL WHO KNOWS YOUR FATHER'S CONDITION THE BEST!! There are many people who visit this site. Some are brilliant and they make a lot of sense. They will be the first to tell you they are providing opinion only! Everyone who visits this site are very helpful and openly share theirexperiences. I don't believe you can find a better site for information and support. Back to your Dad's condition and my opinion. Mucuna Puriens is a plant common and plentiful in Asia and Africa. MP co ntains various amounts of Levodopa. It is widely used throughout the world because it is cheap and is a natural source appealing to many PWPs. The problem is the amount of Levodopa varies from plant to plant. The user's dose is therefore inconsistent. Many MP users don't trust their prescription drugs and side effects that they bring. My opinion is to use prescription medications. You stated your Dad is taking 100/25 Sinemet. I don't know if you're from the US. Here it is written 25/100; 25 mg carbadopa and 100 mg levodopa. Levodopa is what your brain requires so you have a chance to be normal, but it can't pass the BBB (Blood Brain Barrier) on its own, it requires assistance from carbidopa. I think getting the right recipe for a PWP IS ALL ABOUT FINDING WHAT WORKS BEST FOR YOU. BOTH MEDS AND TIMING ARE IMPORTANT. You also need to regulate when your Dad has his meals. He has to give his meds a chance to work. He will not get the full benefit if he doses at 5:15 and has that delicious 16 Oz rib eye at 5:30. Eating at 5:00 then dosing at 5:30 also doesn't work. A protein meal requires more clock scrutiny as it blocks the uptake of Levodopa in the intestines. Carbohydrates such as fruits and vegetables are ok. Your Dad needs to take his meds 45-60 minutes before eating or 1.5 -2 hours after eating. Follow this schedule and he should be fine. My opinion read up and have a talk with his doctor. Ask questions if you don't understand. Join a support group. Ditch the suggestions from the well intended community. One of the comments suggested hospice. Going this route doesn't mean you are giving up. In fact it could be the right path to take. I wish you the best Joy. Feel free to contact me at any time.

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