We were delighted to host Dr. Jonathan Sackner-Bernstein who we interviewed on the topic of "Why I am optimistic that we might now have a Silver Bullet for Parkinson's", followed by a Q&A session from our audience.
The recording of the interview is available now on our YouTube channel so please take a look:
Please also visit our website if you want to know more about us and want to be added to our distribution list for future events: nosilverbullet4pd.com/
We will be announcing our next speaker very soon.
Written by
Michel0220
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Thank you, Michel.🙏 I am now much less skeptical about Bernsteins therapy involving dopamine restriction, given my personal and ongoing reduction in the need for C/L medication, which has lasted for almost 2 years and has been reduced to zero. Although I unfortunately cannot apply his RB-190 medication, most of us are in their own way actually working on improving cell biology and viability in our PD, specifically in relation to reducing the mentioned oxidative stress, decreasing alpha-synuclein deposition, and promoting neuron viability.
In addition to all the known PD lifestyle improvements, it seems for me that a simple vitamin B-complex partially fulfills that role and helps promote these processes. Research shows that particularly B2, B6, B9 and B12 are important in this.
It gives me hope that there may be an underlying mechanism and that it is not just a temporary alleviation of PD symptoms, as my neurologist claims with his famous nocebo contribution.
Thank you so much for the nice words Esperanto. Having the likes of R Barker on his board is testament to the interest that his research has generated amongst some of the world’s most respected PD scientists. We now need the trial to take place to validate his theory .
Michel. I did. Obviously that meant enduring once more S-B's dubious sales pitch for grant money to fund a drug which he owns all the profits for. To find RB on a slide, of an alleged advisory board , which "answers stupid questions" and "pushes back" at controversial ideas, but which is not mentioned by RB on any of his websites, and cannot be discovered by Google search.
You imply an endorsement. I will write to RB for clarification. "Talking to the FDA" about IND strategy is not proof of concept. The phase 2 trial is proposed but non-existant. Phase 2A trials are about safety and tolerability - and will not "show that dopamine reduction therapy is the future of Parkinson's treatment." as S-B claims
One of the saddest aspects of my experience of Parkinsons Disease is how many gullible people desperate for "out of the box" solutions believe experts are thick or dis-honest.
This is lousy science, from someone who is keen to emphasise his scientific credentials. He needs $5 million . Annovis raised over $50 million to fund research into Buntanetap by a public offering. Same people who "wont invest" in S-B. Because he doesnt make a credible case.
Well Winnie, it’s obvious that you don’t believe a word of it and that’s OK. But how many ‘theories’ have already been advanced that turned out to be wrong after millions spent and years wasted? Since my diagnosis 8 years ago, there has been little material progress in treatments, and even those in development seem to be offering marginal gains, where improvements have to be measured by statistics rather than by obvious clinical improvement. I don’t claim to understand the science, but many our waiting for a revolution and like the glove idea, it will probably come from someone working on the fringes.
Well, to quote one obvious example stem cell transplants are now at clinical trial stage. I have reviewed the excellent no silver bullet presentation by Roger Barker on the subject and find nothing to support any of the claims by SB
I hear you on the last sentence. Sometimes I feel that my interactions with health care professionals are merely an exercise in mapping my deterioration.
I am among many who have put faith in stem cells to treat Parkinson's disease. Now Dr. Sackner-Bernstein presents a logical theory about dopamine levels in PWP. Sackner-Bernstein's theory is incompatible with adding dopaminergic cells to a brain that, according to him, has too much dopamine.
So frustrating to learn that stem cell treatments may have just been chasing our tail, but if the theory is correct then at least we could get ourselves on the right track.
His theory may not be incompatible with adding stem cells because the stem cells being added aren't damaged , i.e., don't have toxic levels of dopamine.
While time will tell of his theory is correct or not, I do applaud the doctor for his outside the box thinking and his persistence in the face of ridicule he must get from the establishment. Especially when you consider the establishment has delivered virtually nothing in the past 50+ years.
Mainstream neuros have spent billions over decades and still not advanced treatment significantly beyond a 1960s c/l drug.Time to give alternative SB a fair chance.
Thank you for organising this latest interview. I too have been keenly following Dr. Jonathan Sackner-Bernstein's research for some time now and truly hope he succeeds in his work. I also communicated directly with Dr. S-B not that long ago expressing appreciation for what he was doing.
I am in the process of trying to wean my WWP from the synthetic C/L as she has developed, what seems like, dementia. As C/L has been known to cause symptoms resembling or could be confused for dementia, I am hoping that replacing her meds with Mucuna may be a solution. Apart from this, the C/L has many other side effects, which even indirectly can worsen someone with PD.
Mucuna has been used for thousands of years, and has been reported in many cases not to cause serious side effects. There are reported cases where the dose of the Mucuna has not needed to be increased like the C/L does.
Mucuna is a natural supplement and, much like the existing drug that Dr. S-B is trying to re-purpose, does not attract investors due to the lack of ROI. So, my question is in two parts. First, could the L-Dopa found in Mucuna not cause the same problems that excessive C/L may be causing and secondly, why not try to finally raise funds for properly developing Mucuna. As there are numerous sources of Mucuna, many of which are dubious or inconsistent in their contents, there could be investment opportunities in finally developing a top quality Mucuna, grown in a regulated and consistent manner and backed by the right clinical tests.
There are increasing reports and findings that the L-Dopa in Mucuna is generally better tolerated, acts quicker and lasts longer than the synthetic C/L. This has been backed by reliable tests done. It has been used for thousands of years without serious side effects - if any (totally unlike C/L) and seemingly without having to substantially increase the dose as one needs to do with C/L. The majority of the people now using Mucuna would probably disagree that the two are exactly the same. Hopefully, further research will finally confirm this.
I think the idea that someone can say that they are "optimistic that we might now have a Silver Bullet for Parkinson's" when they have not so much as cleaned a test tube in anger (at least in the pursuit of this particular solution) is the most bizarre nonsense I have read to date and that is saying something.
Thus far this guy has done very well at convincing some members of the community that the 'establishment' is a single monolith constrained by groupthink that has pushed only one solution over the past 50 years. That is plainly nonsense - many of the interventions that have been trialled over that time have sought to exploit unique theories as to why PD manifests/progresses and how it should be treated.
As for funding, isn't he a world renowned cardiologist and doesn't he own the patent on metyrosine for PD? He should have as much access to pharma type funding as pretty much anyone, no?
Oh! The priests of the temple are again worried about maintaining a monopoly on the begging. $
After all, here the message is effective:
“ Too much dopamine is toxic !”
isn't this what we PwPs experience every day?
After more than fifty years , the custodians of the “ Word of God “ should have improved these drugs like Levodopa in its side effects such as dyskinesias , at least!.
no ... they have not even tried.
Now they cry because no one trusts them anymore.
Lol extra lol.
What matters are the results, everything else will become extinct, slowly or suddenly, like the dinosaurs.
Greetings from Italy
Soave grape variety!
Please don't be boring, Life is too short.
🙂great analogy Gioc.I guess many folk get comfort following entrenched mainstream and get uncomfortable with any challenges to their icons, no matter how valid.
The fact is that if you don't get positive results you are on a trend that will lead to extinction. Here it applies to an empire, to a financial giant and also to a well-defended monopoly such as the Western pharmaceutical industry.
It doesn't matter how big and powerful they are, or how much propaganda they do; in the absence of results, slowly or suddenly, they will disappear. This is not a good thing.
It has always been like this, even the Assyrians became extinct. 😀
when life and survival are involved on a large scale, things are resolved quickly, but just as destructive behaviors lead to the disappearance of a system, only the responsible and constructive intelligence of man will save us.
Simply fighting something without a better functional idea is not the best way to “take care” of the problem.
Looking at the last few years of PD research I see millions and millions of dollars spent and no results. Just propaganda. If they worked for a company based on results and product they would be fired soon after.
Here, however, they have a thousand excuses for failures and cry for more money.
In my opinion the committees responsible for deciding which research to fund should be held accountable for the successes and failures of that research, and a monitoring system should be in place to evaluate their work.
I totally agree Gioc.I know it'd never happen but Imagine if a plan for all PD neurologists was put in place with everyone accountable, to the community and an independent body , for their contribution to the plan progression. Including accountability for the directions taken and directions ignored. I think we'd have been much more advanced by now.
I always have little respect and trust in activities that say they take on the great responsibility of saving the world and then do not accept any form of control over their work, such as international organizations.
Bah! Self-referential and irresponsible elites are unforgivable, especially in the field of health.
They make a lot of noise when you question their leadership, but as soon as you remind them that this leadership entails responsibilities and positive results that they are not capable of producing, they cry like children caught with their hands in the cookie jar and then disappear into silence like the cowards they are.
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