I came across an enlightening YouTube video featuring Dr. Jonathan Sackner-Bernstein -------------paste [https:] then add [//youtu.be/k703Shlgkhw?si=iuLPYvtohxJ-Q3pQ] ---------------, prompting me to discontinue my use of LD medication.
Note - the modarator has a heavy french accent - you can fast forward to Dr.Sachners presentation.
I ceased taking Sinemet on November 15th, previously consuming 2 pills every six hours. Approximately six weeks before stopping, I had switched to the branded Sinemet due to issues with the generic version. I experienced severe right-sided mouth pain akin to TMJ (rated at 12 on a 10 scale) and facial swelling. It was revealed that the generic medication was ineffective due to my adverse reactions to the binders used.
Since discontinuing the medication, my down times are less severe than when I was on the drug. Additionally, a high B1 TTFD form of Thiamine regiment for the past six months , and has significantly alleviated my fatigue issues. I've crafted a program that suits me well.
In terms of Parkinson's therapies, be it drugs or devices, the focus within the "PD industry" is on augmenting dopamine or its effects. However, excess dopamine appears to induce toxicity, leading to neuron dysfunction and death, exacerbating the disease. Interestingly, dopamine levels inside neurons are already elevated in people with PD. Dr. Sackner-Bernstein proposes repurposing and testing a dopamine-reducing therapy in Phase 2 trials, having completed the pre-IND process. This drug, tested in three standard preclinical models, reversed pathology in all three.
While challenging established approaches in Parkinson's therapy may face resistance, the data speak for themselves. I'm am exploring the possibility of initiating a grassroots crowdfunding campaign to support Dr. Sackner-Bernstein's research. With the aim of collecting $1 to $10 donations, we're targeting $250,000 to encourage people to test the viability of his theory. Parkinson's affects many, and I believe this initiative could make a significant impact.
PLEASE LOOK AT THE VIDEO AND PROVIDE CIMMENTS AN SUGGESTIONS.
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Let me see if I got this straight - you went from 600 mg ( or 800?) of levodopa medication daily to zero, all at once, and did not experience any adverse effects of any kind? Did it affect your ability to move?
Hi. I apologize for the delay responding. Yes, that is true. I still experience some freezing, but not as much, and I've increased the amount of B vitamins - TTFD (100mg), Benfotiamine (300mg), a sublingual B1, and a B complex.
I'm open to this lateral thinking and there may be something in it.My question to him some time back was: " If the problem is that the neurons have too much dopamine and actually need a reduction. How does that explain why we improve symptoms when we take levodopa ? Surely we should not need the top up. "
Jonathan's reply:Sorry you need to engage and appreciate the question.
It's really hard to know what the definite explanation is, particularly given the lack of data showing what levodopa does long-term on a cellular level. I'm sure that is interesting question to many, but unfortunately the tools don't seem to exist to study this in people.
I admit I was spoiled by my career in cardiology research, where heart biopsies were obtained in many studies, before and after treatment that could show protein and gene expression. Can't do substantia nigra biopsies!
Here is my belief of a reasonable mechanism that could explain the early benefit to a drug that may not be beat long term.
Levodopa acts largely by it binding to dopamine receptors. Dopamine receptors are built similarly to many other receptors in the body called G-protein coupled receptors. These kinds if receptors can become more sensitive to changes in the level of a neurotransmitter when the average level of that neurotransmitter is increased.
So a person with PD who can't send signals well within these nerve connections in part because the nerves are only able to produce a little bit, could find that little bit released is now enough to produce movement when there is more dopamine around because the receptors are more sensitive.
Apologies jf I am not being clear. But it is complicated. There are other situations in medicine where this situation is proven to occur (I only have evidence in lab studies so far for levodopa vs RB-190). So I'm not proposing a new concept in biology.
I think from a diabetic perspective, this is an easy question to answer. Similar mechanism is at work in diabetes where there is sufficient insulin floating around and the cells are unable to absorb and process the insulin effectively. One solution is to flood the body with more insulin and somehow this works which is counterintuitive. I never quite understood the logic behind this.
The initial solution of using insulin injections is now replaced by using one or two of a vast array of available medications that attempt to address the root of the problem which is to increase the insulin absorption which is the right thing to do.
I see something similar happening here. Maybe this doctor is not that far off in his imagination after all.
PD your insulin story kind of makes sense but isnt the dopamine explanation different. Isn't he suggesting the opposite,? That there is very little dopamine 'floating around' but too much dopamine in the reduced number of cells ?Hence my question.
I have little biology education so maybe struggling to understand the cellular interactive picture.
Indeed like park_bear asked, the dosage is important. With higher doses of C/L, one would expect more spread throughout the day (at least 4 times instead of 2). Moreover, many women are prescribed higher doses, while research suggests they can suffice with half the dosage compared to men.
The potentially suboptimal use of your medication, be it generic or Sinemet, can likely compromise its effectiveness and lead to serious side effects over time. I would first seek clarity on this matter before embarking on new experiments.
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Research Funding
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Feeling we are losing control and that things will be worse in the future, adds stress & anxiety which creates a destructive feedback loop.
