Looking for a neurologist working with Mucuna
 

Anyone know of a neurologist working with Mucuna?

My Mom just moved to Sinemet but she is already having dyskinesia attacks about every 6 weeks. She is willing, we just need a qualified neurologist who can be very sensitive to her delegate condition.

The purpose of carbidopa.....
 

Is to prevent the amino acid, l-dopa from beng metabolized to dopamine in other tissues in the "periphery" , that is outside the blood brain barrier. Carbidopa doesn't cross the blood brain barrier but inhibits an enzyme in peripheral tissues which deactivate l- dopa by converting it to dopamine, and since dopamine itself does not enter the brain either, along with reducing the amount of l-dopa in circulation which is available for uptake into the brain, the resulting peripheral dopamine has a negative effect on cardiovascular function.
Thus using Mucuna is like using the first prepartions of Levodopa, which contained no carbidopa, and was replaced in it's formulation, since it was shown that smaller doses of levodopa were more effective when administered along with. Carbidopa. I believe that dyskinesia are caused by a " flooding" of dopamine in the dopaminergic transpotrer in the motor control areas in the forebrain , IMHO, mucuna does not offer any real advantages, other than it is cheaper than the synthetic product. An explanation for your experience with dyskinesia from sinemet, can be found in speculating that you are overdosing on sinemet, that is, your dose is overestimated because the carbidopa is doing its job just fine. But nothing wrong with using mucuna to obtain getting PD relief, just be warned that you will probably work your way up to a larger overall dose of l- dopa, and it could result in earlier onset of dyskinesia.

Functional Medicine
 

I don't mean to be a downer, but I cannot think of any doctor who will take on trying to manage your mom's PD with an herbal. The risk of malpractice is just too high. There is; however, an alternative. You could look for an MD or DO who practices Functional Medicine. They treat the person not the disease.

My General Practitioner is willing to help me use amino acid therapy as a way to keep Sinemet dosages in check, but I cleared it with my neurologist first. This might be a workaround for you.

http://www.functionalmedicine.org/about/whatisfm/

Good luck!

Laura

>Yes, good of you to point this out. I think CysReplete and D5 are used for that purpose. I welcome any knowledge on this.

> I see what your saying. This is from "Dopamine Side Effects" at drugs.com "Cardiovascular side effects include hypotension and induction of arrhythmias (ventricular arrhythmia, atrial fibrillation)."

> I'm not the one on the meds, but in general the dose can't be lowered without introducing tremors and pain. I'll find out if the tremors (low dopamine - I hope I'm not over-simplifying) and dyskinesia appear at separate times.

> not at all

>well put .. this is more like an amino acid... I see your point, I'm finding out how unfortunately so little formal research exists on how to dose with Mucuna. I do however see some research saying that the Mucuna has other properties that protect nerves. The in-network doctors are not picking this up, but if it looks promising we will try to get a study going..

thank you.. we need that.

first of all dyskinesias are caused by a fluctuating l-dopa concentration in the brain, not directly by too much levodopa. a normal person does not get dyskinesias taking sinemet and when someone goes on a pump that delivers a smooth flow of l_dopa, the dosage is upped a little and the dyskinesia rate is greatly reduced. when someone goes off the pump back to oral sinemet, dyskinesias don't kick in right away. so the challenge is to try to keep the concentration of l-dopa as constant as possible, and with the very short half-life of mucana because it doesn't have carbidopa, it's going to be worse than sinemet imho. sure people post here that they are taking it in lieu of sinemet but you have to ask how advanced their pd is, in the early stages your brain can store the l-dopa and keep it from being broken down so dosing isn't that critical, you might get by with 100mg every 4 hrs taken 3-4times/day, it's just like topping off a reservoir. at the disease progresses, it's more like trying to fill up a bucket with holes in it, you battle to add more than is being broken down.

i find it a little strange that rather than ask if anyone else here has successfully eliminated dyskinesias and continued to take sinemet, you immediately want to change to another short acting l-dopa drug, mucana. just curious:
1, how old is your mother and when was she diagnosed?
2. what pd drugs has she been on prior to sinemet?
3. could you be more specific as to how she is doing on simemet when there is no dyskinesias, what sinemet formulation she is taking and dosages.
4, is she seeing a neuro and what is their opinon about the dyskinesia?

people on this board may post they are taking mucana but almost all of them are taking it in addition to sinemet as far as i can tell. large amounts of l-dopa without carbidopa can make one very naseuos. without the carbidopa, most of the l-dopa is converted to dopamine in the stomach which cannot pass into the brain

deciding to just switch to mucana and eliminating all sinemet might be much worse than adjusting sinemet.

i suggest you buy a used copy of "the parkinson's disease treatment book" by ahlskog on ebay or amazon, probably will cost you less than $10. if will help you work with a neurologist.

Thanks, I will read the book that will come in handy. I don't have the answers to your questions right now.

Please understand the documented benefits to this natural l-doba source. I want to stay positive, only then can I can see the right solutions. You may understand, there is more than l-dopa in mucana. You may be on to me, I tend to believe that presently, natural compounds are as a whole more complex than the current man made compounds. Chemical plant fertilizers have been around for a while now, those are often criticized as making un-healthy plants. They look good for a while, but the our taste buds offer a clue as to what they might be lacking. I'm do advocate, study, and use prescription drugs where necessary. I take this seriously though. They have limits and we have more to learn from nature. If I can exploit diet and natural sources I do that first.

I agree with your concerns. Fact remains, present course of treatment is coming to a close. Please relax, I appreciate your motivations. In the advanced state, Mucuna would not be used alone, would not be used without a doctor (preferably a full-blown neurosurgeon), and may not be used at all. I see that Mucuna (with all its natural ingredients as a whole) can possibly be used correctly with careful testing and supplementation. The present treatments are getting worse (sorry I don't have the details). I'm following Dr Hinz's research as an alternative before this is over for good. You have to know how lucky you are to have this research like this published for everyone to use; I hope you can see the value even if you would never ever use it.

Do we have case studies with Mucuna that show something different?

I may be a lack of case studies, but there are case studies:


doi:10.1155/2012/840247
The Antiparkinsonian and Antidyskinetic Mechanisms of
Mucuna pruriens in the MPTP-Treated Nonhuman Primate

"Mucuna pruriens contributes to both its anti-PD and anti-
dyskinetic effects."

doi:10.1136/jnnp.2003.028761
Mucuna pruriens in Parkinson’s disease
"M pruriens formulation seems to possess potential advantages over existing commercially available controlled release or dispersible formulations of L-dopa" ... "No increase in dyskinesia severity or in peripheral dopaminergic adverse events was found on the mucuna preparation." ... "If these findings can be confirmed in larger and longer term studies, mucuna would seem to be a reasonable commercially viable alternative to standard L-dopa."

"Amino acid management of Parkinson’s disease: a case study" Dr Hinz doi: 10.2147/IJGM.S16621
Details how therapy manges neurotransmitter levels

Bioavailability of L-DOPA from HP-200 : a formulation of seed powder of Mucuna pruriens (Bak) : a pharmacokinetic and pharmacodynamic study
doi:10.1136/jnnp.2003.028761
"Conclusions: The rapid onset of action and longer on time without concomitant increase in dyskinesias on mucuna seed powder formulation suggest that this natural source of L-dopa might possess advantages over conventional L-dopa preparations in the long term management of PD. Assessment of long term efficacy and tolerability in a randomized, controlled study is warranted."

best of luck.

what disease does your mother actually have?
 

does she even have parkinson's? or ataxia?
http://neurotalk.psychcentral.com/thread182647.html

She has Spinocerebellar ATAXIA .... I'm shocked someone read that post... Wow, that was a hard day.

Today, I'm more comfortable with her Neurologist and his treatment but I'm still uncomfortable with her side-effects. They are getting out of control. Dr Marty Hinz's method is still a priority so I have been and gathering information and studies for the Neurologist and family so it is ready to go for them when they need it.

So, back on topic, now the task is to contact more medical doctors that practice Dr Hinz method until I find someone smart that will work well with the Neurologist.