Dopamine the problem?

[stocktiki]

This is old, but scares the crap put of me. Is dopamine and possibly c/l making things worse? Seems kinda like Dr. Sackler Bernstein is saying. My fear is mindless taking CL will burn me later...

Any thoughts?

science.org/content/article...

[Dap1948]

I’ve read it twice and I think one thing it says is that antioxidants are beneficial for the process, so I will continue consuming my blueberries and my hibiscus tea and not worry about it!

[JMDean]

Levodopa toxicity has been put to bed back in the early 2000s through a number peer reviewed publications. Dr. Sackler Bernstein is a cardiologist without the proper expertise who appears to be selling something on his website (which hasn’t been updated since 2018). I hate to put things in such stark terms, but he’s providing disinformation that will not improve your quality of life, and could lead to long-term negative consequences. Moreover, most of his claims can be disputed by a simple search in PubMed, where peer reviewed, published research can be easily found. Given his previous work in cardiology, it’s well within his skill set to do that research and yet here we are, pushing back against levodopa phobia once again. That doesn’t mean antioxidants are bad nor are other nonpharmacological approaches. I am just stating that our community does not need to hear from a physician in an unrelated discipline telling us why you shouldn’t take the gold standard medication for Parkinson’s.

[JayPwP in reply to JMDean]

And what has doctors from related disciplines offered till date?

[GermanShepherd79 in reply to JayPwP]

To date, Sinemet and others. Deep brain stimulation. HDT therapy. Tass glove coming soon…just to name a few.

[JayPwP in reply to GermanShepherd79]

Only pharmaceutical and surgical options, those which make money.

HDT is still not supported by most neuros and big pharma. Dr. C's funding request for RCT was repeatedly rejected by everyone including MJFF.

Tass gloves are again out to make money that is why it's patent pending, luckily for us, Dr. Tass gave away too much details in the first published paper which enabled others to make DIY Gloves. A mistake Tass is now trying to cover up with a patent application and talking about possible adverse reactions in recent interviews. There was no mention of adverse reactions in his earlier interviews.

[GermanShepherd79 in reply to JayPwP]

neurologists cannot support a therapy that has not been tested by at least one large double blind cross over study. As soon as someone died from their PD, their family would sue because they had not received “standard of care”. The doctor would lose everything, his work, his home etc. the best they can do is tell each patient that if they choose to try HDT on their own, that is up to them. And possibly he’d have them sign something to protect himself. And that same doctor may well turn around and give HDT to his mom.

You have to understand the realities of our culture. People are sue-happy. I know a man who rented out one apartment for a short period of time. Several months after her tenancy began, he was sued by the tenant, who failed to clean her refrigerator…the complaint of the suit was … her refrigerator was dirty. A lawyer took the case. The man’s own lawyer told him to settle, pay these jerks money because her refrigerator had not been washed by the complaintant. He didn’t. In the end, the woman disappeared, walking away from the costs her nonsense had caused others to pay without any downside for her. The lawyer that brought the frivolous suit was turned into the bar, but nothing happened to him. The man’s lawyer got paid even for his bad advice. This is where we live. This is our culture.

Neurologists can do nothing. In my city under COVID a man was hospitalized with COVID. He was not responding to Remdesivir and he was dying. The man’s family wanted him tried on Ivermectin. The doctor agreed, but Sentara Hospital did not agree. The case went to court. The judge ruled that Remdesivir was the “standard of care”. Sentara won. The man lost. The family lost. The doctor lost everything, job, etc.

We need to stop blaming doctors for the way our culture works.

[cgreg in reply to JayPwP]

We, the patients who have PD, will be the first ones to suffer if we constantly follow bogus claims which are not backed by reliable scientific evidence. The burden of proof is on the one making the claim (such as Dr. Sackler Bernstein). We need to keep in mind that MDS Neurologists are willing to prescribe non-pharmacological treatments such as exercise and Tai-Chi because these have been validated by research even though they do not benefit the pharmaceutical industry, and actually reduce our reliance on drugs.

[JayPwP in reply to cgreg]

Ok... Ok.,. I concede

[JayPwP]

Maybe he is right, but what are our options?

[WinnieThePoo in reply to JayPwP]

He's not right. This is a good read

mayoclinicproceedings.org/a...

Sackner-Bernstein is a cardiologist with self promotional marketing experience but absolutely zero clinical experience of parkinson's disease who has carried out zero clinical research but has taken out a patent on an idea with no clinical testing which would make him a fortune if he could sell it

Whilst Eric Ahlskog has decades of clinical experience and heads the movement disorder department of a leading health care clinic

One of them knows what they are talking about

[JayPwP in reply to WinnieThePoo]

Let's reserve judgement till he is proven wrong 🙏

[WinnieThePoo in reply to JayPwP]

Well, no - I disagree. Doing that causes people like stocktiki to needlessly fear levadopa, and suffer a significantly worse disease experience as a result. It's not as though this is a case of hanging around to see if a new idea brings a new therapy. It's screwing up peoples current therapy with bad science as a way of getting rich

[JMDean in reply to WinnieThePoo]

This article is an excellent addition to this conversation. Dr. Ahlskog has been a giant in the field for many years and his fairly recent article hits on upon many if not all of the key misconceptions about medication’s for Parkinson’s. What we really need is something that is neuroprotective, but in the interim, new formulations that improve the benefits derived from those drugs, while minimizing, the side effects are going to be very important part of the tool kit, alongside exercise. Thanks for sharing!

[GermanShepherd79]

This article offers no data. It is merely an hypothesis which according to JMDean did not pan out. People are free to suppose whatever they want, but it is data that counts.

[JMDean in reply to GermanShepherd79]

I think it’s very important to be wary of publications of all types that are too old. In all fields of medicine, but particularly in Parkinson’s, things change very quickly and conclusions from 7–10 years ago, not to mention more than 20, are often out of date and have been discarded. That’s why I’m so pleased by the comprehensive review article shared by WinniethePoo. Written by a master clinician working for decades at Mayo clinic, the article speaks to his long-term institutional knowledge of what used to be en vogue decades ago versus what is standard clinical practice today. And it’s available as an open access article so everyone should take a moment to download it and review the different “myths” that Dr. Ahlskog goes through in order. Thanks again, WTP, for adding it to this conversation.

[Gena_Diaz]

Neurologist Dr. Constantini did not do animal studies, I believe; He verified that by giving two injections a week of vitamin B1 to his patients who had Parkinson's, their symptoms improved a lot, they walked better, spoke better, etc.... what did his professional colleagues do, nothing, but nothing at all; They were not interested in what he did and what worked with the sick. We can let his achievements be lost forever or we can fight, as some people here have done, so that they are not forgotten. It seems unbelievable that there are people who still do not know that global health is managed by pharmacological companies. Another thing is whether this doctor is right or not; I know of a scientist who was sentenced to death for saying that the earth was not the center of the universe, (maybe he didn't do any double-blind studies)

[JayPwP in reply to Gena_Diaz]

😆😆😆😆

[amykp]

I think the problem is, nobody knows for absolute certain, and new theories of dopamine toxicity keep rearing their ugly head(s).

So what to do? I'm at least going to listen to Sackner-Berstein's newest podcast. I don't particularly trust my (sinemet-happy, "take-as-much-as-you-want-it's-totally-harmless!) neurologist any more than I trust anyone else.

It sure is frustrating, though!

[Gcf51]

"take-as-much-as-you-want-it's-totally-harmless!" got me up to 13 a day. I am now on 5-1/2 a day. I do take a couple of extra on dance night.

[Daisies22 in reply to Gcf51]

How did you manage to get from 13 to 5 1/2 tablets a day, did you have any withdrawal episodes?Do you take any other medication?

Thank you.

[Gcf51 in reply to Daisies22]

I did cut back slowly. It's been awhile healthunlocked.com/cure-par...

[Daisies22 in reply to Gcf51]

Thanks, will read.