Medication: I'm trying to replace Carbidopa... - Cure Parkinson's

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Medication

Dottie2 profile image
42 Replies

I'm trying to replace Carbidopa/Levadopa with Mucuna Puriens. Wondering if I need to slowly reduce dosage or would it be ok to stop one 25/l00 as long as I'm still getting L-dopa from M.P.?

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Dottie2 profile image
Dottie2
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42 Replies

Have you worked out the dosage of Mucuna you will require and how often?

The two people I know who are only using Mucuna have to take a very specific dosage every 90 minutes. What does your neurologist say about this? Or are you working with a naturopath or other physicians?

Where do you live....US, UK, Canada?

Dottie2 profile image
Dottie2 in reply to

I live in US. So far I haven't found a neurologist that is interested in or knows anything about Mucuna so I am just experimenting. So far all I have is a really strong tremor in both arms & legs, but have been on Sinemet about 6 yrs. Makes me nauseated and causes dyskinesia . No dyskinesia on Mucuna.

Rengifo04 profile image
Rengifo04 in reply to Dottie2

How many sinemet a day for 6 years have you been taking ?

Dottie2 profile image
Dottie2 in reply to Rengifo04

25/250 3x/d is what it took to get some relief from my tremor

In the last yr. or so started trying to slowing decrease amount due to side effects. For awhile have been taking l-l/2 10/l00. Now trying to replace more with MP.

tobebo profile image
tobebo in reply to Dottie2

My Husband has been taking Carb/Levo 25-100 for 3 years now. At first it helped his symptoms, but now, even up to 1 pill 5 times a day, it does absolutely nothing. Would love to go off of it because the side effects along with all his other meds are worse, dizziness, balance, etc. We tried going off by taking one dose away every 2 days, but didn't get past the second day without him having trouble at night with sleeping.Which is odd, because he takes a sleep aid. Medication is very frustrating for us and every time we talk to the neurologist about having difficulty, he adds another pill, which I usually end up taking my husband off of it because of the side effects after about 2 weeks, then he pushes the DBS surgery.

jdesesa profile image
jdesesa in reply to Dottie2

Contact Dr Cristian Enescu Md neuroligist 

New York City # 917-200-1663

New Jersey # 732-557-6330

ruthgt profile image
ruthgt in reply to

I also try to use mucuna I used c./l 25/250 I have a very swollen left leg and ankle .only the left leg .does anyone of you heard about sach a problem

Ramuu profile image
Ramuu

I have been on MP since 2013. I never took allopathy ; though it was recommended in 2010 July, when I was diagnosed having PD . I managed with exercise, yoga, cycling, breathing exercise, walking and w/o any medication. Even now I take only Indian MP ( Vaidhayratnam Kerala INDIA , pl search google , you will get full details , you can order ON LINE, they ship world wide ) powder 1 TBS x 3 times per day in empty stomach with normal drinking water 200 ml with 1/2 fresh lemon juice for quick action in 30 Mins (must; otherwise it will not work, I understand , same is the case with Allopathy ; this is for better absorption and quick action ). This gives 2.5 hrs ON time. In addition to this I take 250mg x2 Ashwagandha Tabs & 250mg x2 Shudha Gugulu from Himalaya Wellness Products from Bangalore INDIA ; with 500 ml warm milk; once in morning 2 hrs before break & at before bed time after dinner fast this can also be ordered ON LINE. Please Google search for Benefits of Ashwagandha ; established reversal of PD in animal model. If you have any constipation you can buy Bruhath Tripala from Vaidyaratnam, very effective herb, one TBS in warm water 200 ml at bed time will take care of constipation, one can adjust the dosage, depending on ones condition.

If you need any more information or help , please let me know.

Reg

Ramuu

leojohn profile image
leojohn in reply to Ramuu

Ramuu

What is Allopathy?

Your reply is very interesting.

Ramuu profile image
Ramuu in reply to leojohn

Allopathic medication viz. , Sinemet, L- dopa etc, which are also called as western medication or synthetic medication

leojohn profile image
leojohn in reply to Ramuu

Ok

Thanks.

I will need to look into that. My husband is taking Sinemet and Comtan. He is having fluctuations in BP and irregular heart beat.

I know both are caused by the medications. I know the Medication is the cause because of the times of the readings. I did look into it while we were in Singapore. At that time (a few years ago) it was not allowed for use in Singapore .

We live in Canada. I will need to study dosage etc. Any suggestions are greatly appreciated.

Thanks

Ramuu profile image
Ramuu in reply to leojohn

Dosage depends on condition, one can make trial , no harm. Start with 1 TBS x 3 times a day ( please note, it has to be taken empty stomach only, squeeze half lemon, add about 200 to 250 ml normal drinking water , mix it well and consume ) ; slowly increase the dosage , only if required, but should not exceed 10 grams per dosage.

God Bless You & Your Family

Regards

Ramuu

Dottie2 profile image
Dottie2 in reply to Ramuu

The Zadopa has a scoop that say its about 7.5g. It takes 2 scoops for me to get relief from tremors.

Are you saying I should not take more than 10g per dose?

Two scoops is 15g. Concerned if I'm taking too much.

Ramuu profile image
Ramuu in reply to Dottie2

My Ayurvedic Doctor advised me not to take more than 10 g, and generally not more than 3 to max 4 times per day, as he has seen many of his patients developed induced dyskinesia , but when he reduced dosage, they were relived of dyskinesia. I feel it is different experience from person to person. Please adjust your dosage No harm.

Dottie2 profile image
Dottie2 in reply to Ramuu

Thank you so much for all the information. I will be looking everything up. At the moment am just taking 4 capsules of 15% l-dopa along with Mucuna tincture drops. Also just started on CBD oil.

Ramuu profile image
Ramuu in reply to Dottie2

Good , our policy should be to take minimum medication, so that our leftover cells don't become lazy and dormant. Please look for elasticity of Brian , there billions of back up cells which will take over provided we give them enough opportunity. We have to undergo pain , not easier than said !!. We have to try often to go on medication holiday, so that we can check whether our body can withstand. This is possible with Ayurvaidic medication, as they are less potent than Allopathic medication.

God bless you and your family

in reply to Ramuu

We are all different, yes, we know. That said, I get the feeling from consults with my pharmacist, neuro and family doctor, we are left with a bit of experimenting on our side as patients.

Ramuu profile image
Ramuu in reply to

You are absolutely right

glenandgerry profile image
glenandgerry in reply to Dottie2

Dottie2 - where did you get the CBD oil and which country are you in?

Dottie2 profile image
Dottie2 in reply to glenandgerry

parkinsonsrecovery.com/cbd

Here is one site you can check out

I'm in US

glenandgerry profile image
glenandgerry in reply to Dottie2

Dottie2, have you noticed any benefit from taking this type of CBD oil?

Dottie2 profile image
Dottie2 in reply to glenandgerry

I've just started using it. I believe they say it has a buildup effect. I do think shortly after I take it I notice some relief with my tremor, but am experimenting with how much to take.

Tremor is my only symptom, so thats all I can address. You probably know this has just come available

Rengifo04 profile image
Rengifo04 in reply to Dottie2

What is cbd oil?

Dottie2 profile image
Dottie2 in reply to Rengifo04

parkinsonsrecovery.com/cbd

This should explain better than I could.

in reply to Ramuu

Hi Ramuu,\

 I was unable to find Mucuna P at Vaidhayratam, is there an other name I can try? please let me know.

thnks

Ramuu profile image
Ramuu in reply to

It is called as KapiKachu Choornam; it is in Sanskrit - Vedic Language. Please go step by step as following :

keralaayurvedamedicine.com/

Click on Choornam& Gulikas tab and select Choornam , this will take you to products display.

On your Ipad/PC/Laptop press Ctrl & F or Function search , in search box type kapi , it will take you to the product.

If you need any help, please let me know, please feel free to mail me : ramanath.tarekere@gmail.com

stevie3 profile image
stevie3

I started using MP a year ago with, I think, great success and I believe it delayed me having to take more conventional medication. A few weeks ago, I started to take prescribed meds but I have negotiated a lower dose than originally prescribed and I'm supplementing it with MP (I use Zandopa). I agree - experimenting is key. We're the ones living with this. My experience has been that while I am grateful to have the resource of a very knowledgeable neuro, who has a particular interest in Parkinson's, he is understandably focused on conventional medication because that is his training. He also has a crowded clinic and little time. As I am going to be stuck with PD for the rest of my life, I've done a lot of research. My conclusion is not original and it is that exercise, supplements and medication will help me manage this as well as I can.

Dottie2 profile image
Dottie2 in reply to stevie3

When you were only on MP, how do you handle being out away from home?... mixing with water, etc.

stevie3 profile image
stevie3 in reply to Dottie2

I used the capsules!

Dottie2 profile image
Dottie2 in reply to stevie3

So Zandopa has a capsule. How many did you have to take?

Do you have tremors

stevie3 profile image
stevie3 in reply to Dottie2

Sorry Dottie - I use MP capsules - the 1000mg from natural herbal health when I'm out and about and need something portable. I use the Zandopa powder - which I get on eBay - at home. The dose is something I experimented with. I have a slight tremor but my main symptom is weakness down my left side and a terribly stiff hand. The tremor isn't that bothersome yet but the Zandopa definitely helps it.

Ramuu profile image
Ramuu in reply to stevie3

Excellent !! God Bless You & Your Family

Regards

Ramuu

sterlingin profile image
sterlingin

Both strategies should work fine - but check how much L-dopa is in each MP capsule / pill ... and match to C/L level

Ramuu profile image
Ramuu

Dottie ,

I remember your posting , you indicated that you have bad tremor in left hand & left leg; if it is yes , please try the following, my hand tremor has considerably reduced !! If you don't have any problem, pl ignore my posting.

For Hands & Legs Tremor

Adho Mukha Svanasana :downward-facing dog Pose ; please see link :en.wikipedia.org/wiki/Adho_...

PS : Put pressure on both hands and legs ; do it only in empty stomach; best time early morning or in the evening after 4 hrs of Lunch, 10 counts x 5 times to 10 times slowly increase every day by 2-3 counts . Take deep breath slowly deep inhale & exhale .

For only Hands Tremor

Bhujangasana : Cobra Pose : Please see link : en.wikipedia.org/wiki/Bhuja...

PS : Same as above

God Bless You & Your Family

Regards

Ramuu

Dottie2 profile image
Dottie2 in reply to Ramuu

Yes, both hands and legs actually. OK I'm trying this.... Thanks for all you help.

Pretty funny site to behold, I'm sure... :)

park_bear profile image
park_bear

Mucuna is levodopa without the carbidopa. Without the carbidopa you need a higher dose of the mucuna to get it past the blood brain barrier. The higher dose can cause nausea. If you can make it work for you, great. If not you can mix and match with some of each, getting however much carbidopa you need to make it work.

SuperMNew profile image
SuperMNew

I am taking both Mucuna Pruriens and ropinirole, and find the combination works well for me. I found a 40% Mucuna preparation, which is the strongest I have found on the market. I do not know what Zandopa concentration is, but it works well, and faster, as well.

The ropinirole worked fine at first, then the effects wore off to where it only helps me for about 2 hours a night. With the MP and Zandopa, I can sleep most of the night. I am also having my leg vein reflux taken care of, which the doctor tells me will greatly help, if not stop the RLS.

God bless!

jdesesa profile image
jdesesa in reply to SuperMNew

Where did you find the 40% Mucuna

SuperMNew profile image
SuperMNew in reply to jdesesa

I ordered 40% Mucuna from Barlowe's Herbal Elixirs, and I went thru Amazon to find them in the first place.  You can do the same, or just use a search engine with the above information as your search subject.

DreamRain profile image
DreamRain

Hi Dottie2, we are now 3 years on from your post and my partner, (early stage PD who started Prolopa (Madopar) a year ago) is thinking of also progressively replacing the Prolopa with Mucuna. What has been your experience? Would you recommend this approach?

Dottie2 profile image
Dottie2 in reply to DreamRain

I had pretty good luck with mucuna, but the taste made me shutter. Maybe it wouldn’t bother you. Think it would be worth a try. But about 2yrs ago after tremors went to both arms and legs I was miserable. After much prayer i decided to have DBS done. I am now tremor free... praising God. Sometimes I Notice a tiny shaking but insignificant. I live in Houston area in Texas. Prayers and best wishes for you and your partner. Talk to your dr about DBS if you haven’t already. It was a miracle for me. Took me about a yr or so to get adjustment right. Don’t know your partners age butler I just turned 78

DreamRain profile image
DreamRain

Thanks so much Dottie2. I am very grateful for your response. My partner is 73. I am so glad that DBS has been so good for you. I send you a big hug and Much happiness. DreamRain

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