Hi, I'm new here, 51 yo, parkinsonian since 3 years, tremor dominant. My resting tremor hits my right hand, rigidity in my right shoulder and bradykinesia in the right side of my body. These are my symptoms. I don't have any kind of pain, postural instability or balance and gait issues probably due to 2 hours of daily exercises, fast walking, stretching and aerobic exercises. Since 3 years I have tried every kind of supplements for long cycles: Vitamin B1, B3, B12, B6, C, D, magnesium, bacopa monnieri, cbd oil, mtc oil, cinnamon, curcumin, nac, glutathione, reishi mushroom, butirric acid, keto diet, vegetable diet, grain-free diet and since more than 1 year I'm on mucuna trying every kind of brands and dosages. I even tried Qi Gong, meditation and cannabis. It seems nothing works to me especially for my tremor, nothing is able to reduce it. So it only remains to me to try Levodopa/Carbidopa starting with a low dosage. Did someone experience the same situation, even tried high doses of mucuna without any result and got relief only with L/C? If I no had relief even trying L/C for 2 or 3 months, may I stop it? If I no had response to levodopa for my tremor, I wonder if then I can stop L/C without risks and coming back using only mucuna. Thank you for your help, any advice is appreciated.
Question about levodopa/carbidopa - Cure Parkinson's
Question about levodopa/carbidopa
You need to speak to your doctor. It's worth trying C/L. If you don't respond, maybe you don't have Parkinsons, and it would be worth having your diagnosis confirmed
You don't say how much Macuna you are taking. Whilst you probably need less, it would be quite normal for you to need 2x25/100 C/L QDS - which is broadly equivalent to 4000mg levadopa from Macuna. That's a huge amount of levadopa to take and it would make most people feel nausea, bloat, and constipation, possibly heart beat irregularities, raised intra-occular pressure and other side effects. I doubt you have taken that much Macuna
"It only remains for me" - there are other options, including dopamine agonists. Again, consult your doctor
Yes I find C/L a better route to relief than Macuna alone, although I tend to mix them a bit
If you get no relief from C/L you can stop it - best under medical supervision (ie your doctor knows , and you monitor for signs of neurological malignent syndrome or other problems. Personally I am able to just start and stop without problems
Tremor is reckoned to be the most difficult symptom to relieve, and may not respond to C/L (although mine does - and most peoples does). There are other treatments for tremor, either alone or in combination with C/L. Again, ask your doctor
If you want to, you could stop C/L and go back to macuna. I have several times - but I find it better to use plenty of carbidopa
Hi, thank you for your kind reply. I'm still taking 7,5 gr of Zandopa ( mucuna ) TDS with green tea as Maldonado protocol about mucuna and pd, it matches to a starting dosage of 3x25/100 C/L TDS, dosage always used by doctors in the early stages of pd, but it doesn't work to me.It's almost like I'm taking nothing. My diagnosis is confirmed by three doctors and datscan. So you were able to stop and restart C/L sometimes.
Mucuna can be very unreliable because, in some people at least, the ldopa gets metabolised before it hits the brain (sketchy explanation but it will do).
Pharmaceutical levodopa preparations come with a decarboxylase inhibitor (bensazeride or carbidopa) that prevents peripheral metabolism and therefore allows ldopa to get where it needs to be, I.e the brain.
I would say the (lack of) efficacy of zandopa, no matter how much you take, is a very poor indicator of how you will respond to CL.
>" If I no had relief even trying L/C for 2 or 3 months, may I stop it? If I no had response to levodopa for my tremor, I wonder if then I can stop L/C without risks and coming back using only mucuna"
Yes you can stop L/C. Best to taper over a couple of weeks, or more, rather than stop all once.
I have been diagnosed six years. I am tremor dominant in my right hand. I am struggling with stiffness and pain in my neck and back. The GP and the Parkinson‘s nurse have both suggested that I try levodopa and, if it doesn’t work, I can stop taking it. I am hesitant to do this as I really don’t like some of the side-effects I’ve heard about with levodopa and I think I will find it difficult to take my medication at the right time with the right foods as I have a very busy working life and two children.
I am 55, almost 3 years since diagnosis and tremor dominant in my right arm like you. I never tried using mucuna but c/l really controls my tremor. I would give the meds at least 3 months at full strength before titrating down
May I ask you when did you start to take C/L, how much C/L do you take daily and what do you mean saying you give the meds at least 3 months at full strength before titrating down ? Does C/L control your tremor all the day h24?
I take it early am, mid day and after dinner. It controls my tremor almost 24 hours. Of course excitement and anxiety can make the tremor come on with meds but I would say Most days are tremor free days
When I first started taking c/l I was quite nauseated and it didn’t control the tremor from the getgo. It took a while before my body adjusted to it. The same went when I tried to titrate down. Everything was fine, my tremor was controlled even at 1.5 pills per day, until one day when it all came flooding back. It took weeks to get re-adjusted.
Is there a reason why you are so averse to CL? I experience only rigidity. For me CL was instantly working without major side effects.
Hi Alaex
Are you aware that there is no meication that reverses the symptomd of Pd? There is only one proven way to do that and it is by doing High Intensity Aerobic exercize. Se the Mayo Cllinic studies report and theAnals of Neurology :
The Mayo Clinic Studies:
healthunlocked.com/cure-par...
The Annals of Neurology:
onlinelibrary.wiley.com/doi...
Whether you are already on medicatiomn ir is necver too late to start doing meaningful exercise. I was diagnosed in 1992 and was put onto Sinemet and Symmetrel for the next two years. THat is when I asked my Neuro to take me off them and put me onto an MAO-b inhibitor, namely Selegiline. Simultanmeous to that, I statrted doing fast walking for one hour every second day, starting off at 20 miniutes and building up slowly to the magic one hour.
Afte 4 years my Pd symp-toms had improved tpo the point where nobody wou;d ever know I still had Pd, other than my neurologist.
Why waste another day before starting to do some Aerobic exercise? Myu email address is john.pepper.rpd@gmail.com and I will give you all the details and any help you might need, at NO COST>
Much of what you have tried might be useful for slowing progression but will not as you have experienced, reduce tremor. I’m 46 and a novice
Just my opinion
How r u doing now
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