Calling all DUOPA PUMP users

[luba1]

Recently I learned hard way that DBS surgery no for me. I am taking around 15 sinemet pills 25/100. So, we as a family are just wanting to do some research and speak to other sufferers whom can give some pro’s & con’s on the Duopa Therapy.

Thanks in advance!! 😁

Luba

[maryalice]

I have been using muccana for the last year with some amino acids. Ive had PD for 20 plus years, It is pure 97% dopomine. There is no leva dopa in it, that is why you have

[Larkr in reply to maryalice]

I would like to know what you are using also. If you could please message me. Thanks.

[maryalice in reply to Larkr]

I will send it as soon as possible.

[maryalice]

I accidentally pushed the send before I finished. Sorry. What I was going to say was you have to take the amino acids. It helps the dopamine cross the blood brain barrier. I also take half a tablet of 25 / 100 This protocol is the only thing thatI have used that has given me relief. I will be happy to share it with you if you message me. God bless.

[Angora12 in reply to maryalice]

Hi so very interested in which mucunia are u using and how often. also what amino acid are u using. We have trouble getting advice where we are. My hubby has been on zandopa but it looks as though he needs to uphis levadopa intake but we r at limit of advice zandopa. Would so appreciate your reply.

[maryalice in reply to Angora12]

I will message the information to you later on this afternoo.

[nourilo in reply to maryalice]

Can you send me the information as well [e-mail]

[maryalice in reply to nourilo]

I will this afternoon.

[JAS9 in reply to maryalice]

Would you please send info on what you're using to me too? Thanks.

[Autumn56 in reply to maryalice]

Mary Alice I would love to know what you are doing. My husband is 6 yearsinto PD and is not responding to the Sinemet. What brand of Mucuna Pruriens powder? What form of amino acids? Thanks you so much for some insight into this

[maryalice in reply to Autumn56]

I will message it to you.

[JRltd in reply to maryalice]

Maryalice...Can you please message me too with the information? I am interested in anything that you have to share. Thank you

[twotutts42 in reply to maryalice]

Hi I’m interested in what you are taking,could you message me also please. Would appreciate it, 🙏 God Blessed

[maryalice in reply to twotutts42]

I sill send it as soon as possible.

[Kipper1285 in reply to maryalice]

Me too please

[maryalice in reply to Kipper1285]

I will message it to you.

[hanifag in reply to maryalice]

Can you please message me too

[maryalice in reply to hanifag]

I will do it as soon as I can.

[hanifag in reply to maryalice]

Thank you so much

[maryalice in reply to hanifag]

I will.

[maryalice in reply to hanifag]

I will.

[AngloAmericanGothic in reply to maryalice]

Hi Mary Alice

My husband tried the Marty Hinz protocol which uses huge quantities of Mucuna. it did not work even for his shakes. However, i would be willing to give it another try as what he has been doing has stopped working. Little support from neurologist. Please send me protocol too if you can. Many thanks

[maryalice in reply to AngloAmericanGothic]

I will as soon as I can.

[move4parkinsons]

Can you tell me what happened with DBS ?

[move4parkinsons in reply to move4parkinsons]

Thanks for letting me know about your DBS .I have just completed tests and am waiting to hear if I am suitable

I have virtually the same symptoms as you both motor and non motor.

Would you be willing to share with m e the other issues you have with your brain which has stoppeď you having DBS and why

they only discovered it at the last minute

Many thanks

[luba1 in reply to move4parkinsons]

I have a bleeding issue in my drain.

[Kaat]

Hi

Go and watch this YouTube noel batten

I think he can treat you through Chiropracic

[guy1947]

15 sinemet 25/100 per day,I was told 10 was max!

[luba1]

Hi Maryalice

I could not have DBS because I have other problems with my brain that DBS surgery can lead to the stroke. I have PD I think over 10 years. I have to take Sinemet every 2 hours and only work if I have empty stomach only 1 hour. I have tremor (which even wakes up me at night) and Left leg rigidity and left leg dystonia, sweating and other symptoms for PD.

I would really appreciate if you share with me your experience with amino acids and mucuna. After I was rejected at last minute DBS surgery and I really do not know what to do next. Do you know how much in 1 pill of sinemet can be in mucuna 97% and where do you buy it. I live in USA and my e-mail [e-mail].

Thank you very much everybody for your reply!!!

[maryalice in reply to luba1]

I will message it to you. As soon as I can.

[Hidden]

If your are taking regular sinemet right now, you may be able to reduce the number of pills you are taking by switching to Stalevo (which contains entacapone which allows more of the levodopa in a dose to be absorbed)... This could be a stop-gap measure for you, while you wait to get the pump installed (not sure how long that takes)...

[Hidden]

Another option is to use Sinemet CR with regular Sinemet only as a "jump starter"... along with stand-alone entacapone tablets (i.e., not Stalevo).

I have been doing this for a couple of days, and it has been working well for me (but I think my disease is probably less advanced than your)...

[luba1 in reply to Hidden]

I take it. Thank you so much!!

[koshca]

Люба, я в такой же ситуации....

[koshca]

Try medical marijuana

Work good. CBD / THC 1:1.

[Autumn56 in reply to koshca]

But how do you function during the day? Doesn't it make you feel weird? My husband has no problem sleeping so it isn't needed for sleep.

[koshca in reply to Autumn56]

No, I don't feel weird. Even more: I feel nothing, just no tremors and pain. I can drive, do whatever I want.

[JRltd]

Maryalice...Can you please message me too with the information? I am interested in anything that you have to share. Thank you