Sometimes I feel that researchers and the suppliment manufacturers are befooling the Parkinson patients. Just do a simple experiment. Think of a suppliment XYZ and Google "XYZ for Parkinson " You will find many results/links that will show it beneficial for PD. The ground reality is that no suppliment has been proven so far for benefiting PD.
Suppliments : Sometimes I feel that... - Cure Parkinson's
Suppliments
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Farooqji
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There was also that study done several years ago that showed that many if not most supplements do not contain what they say they do on the packaging. It is an unregulated industry and so very hard to know what you're taking.
It turns out that it was the study itself that was the fraud. They tested for intact DNA in plant extracts. The extraction process degrades the DNA so if you are testing an extract you need to test for the extract chemicals not the plant DNA.The Attorney General of the state of New York even got in on the act , ultimately to his embarrassment. I wrote the whole thing up and took apart the entire nasty business here: tinyurl.com/y8m6moaj. Consumerlabs.com tests supplements and they find the vast majority have exactly what they say they have.
"Supplements" is a word filled with negative connotations in western medicine. When talking about supplements you are usually talking about vitamins or herbs or unusual foods and in order for something to be technically "proven" it needs to pass the almighty double blind placebo controlled hurdle. Think of your favorite supplement and you begin to see that "proven" is almost impossible to achieve when talking about "supplements". Even worse, illnesses like Parkinson's attack the body in numerous ways that are not fully understood so it is highly unlikely that even if a single supplement had a benefit it would be strong enough to stand out from all the other damage it wasn't helping.
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What's not impossible to prove is that some people are mysteriously reversing or halting the progression of their diseases and this is becoming more and more common and reported on. As a motivated patient you need to ask yourself "how are they doing that" and "might their approach work for me"?
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These people altered the course of their disease:
healthunlocked.com/parkinso...
marsvenus.com/blog/john-gra...
healthunlocked.com/parkinso...
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and according to this doctor there is some proof:
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Personally, I'm not willing to wait for a "proven" technique to start my fight, but I will make use of all the available science to make my own choices.
Costantini just happens to have posted a series of studies about B1 efficacy in several diseases including dear old PD.
Weschley too has found that some supplements help some PD folks. No one size fits all.
Very, very good post !! As a therapist also diagnosed with Parkinson, I've been searching a lot ins Internet......there has to be a reason that some people are progressing faster and some not : diet is important, but for us, it has to be boosted with serious supplements (preferable without Siliciumdioxid and Mgstearat).
And when possible with injections or sublingual >>> a bit more effectively......
Can you say me which supplements you take and in which dose ??
Thank you in advance !!
Almost three years diagnosed, with Stress and still working !!!
(thanks to supplements and also Glutathion, Alpha-Lipon-Säure, and Chlorella (from Europe), Metalcaptase, DMPS, and Selenium)
I'm 100% behind the idea of being an informed patient. A critical first step, however, is developing the ability to distinguish anecdote from empirical evidence. Stating "these people reversed their disease", then pointing to the likes of John Gray, the Out-Thinking PD site, and yourself as credible examples of the claim, suggests you have yet to recognize this crucial distinction.
Are you saying I am lying or one of the individuals listed is lying? If so what proof do you have?
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What's more my statement is 100% diametrically opposed to what you are saying. It is difficult if not impossible to get "empirical" evidence on something like turmeric (not that I am taking turmeric). Anecdotal evidence forms the basis at which to start. Then the patient can choose what to try themselves, and they can come to their own conclusions based on their own experience. You need to start somewhere if you as a patient are going to try alternative therapy.
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Most certainly yours is one of the most valuable voices on this site, but I suspect you do not have a fatal neurological disorder (if I am wrong my deepest apologies) and are therefore able to dispense words of caution without fully absorbing the frustration of doing so.
Furthermore I find it astonishing that an educated individual would not be espousing something similar to what I am trying to say namely for a person who is early in diagnosis with mild symptoms a lifestyle that includes exercise, a healthy diet, and SOME supplements to include simple items like vitamin B, vitamin D, and perhaps mannitol or tehalose which are simple sugar substitutes is in any way a recommendation that is lacking in "empirical" evidence.
I've posted commentary and/or exchanged opinions on the virtues of certain supplements and on the benefits of 'proper diet, exercise, & lifestyle' to one's neuro-health and general well-being on numerous occasions. I typically include link/s to relative studies when I do so.
There is good evidence to be found in many cases. By good evidence I mean strongly stat sig in randomized controlled double-blind studies. For example, citicoline was found to reduce the rate of cognitive decline in a group of Parkinson's patients at the p<.01 level after 18 months.
pdfs.semanticscholar.org/e9...
Likewise, in the study of N-acetylcysteine, it was found: "UPDRS scores were also significantly improved in the NAC group (mean improvementof 12.9%, p = 0.01)", which again is strongly stat sig in in a randomized controlled study.
journals.plos.org/plosone/a...
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On the subject of lies, the foregoing citations demonstrate there is an untrue statement at the top of this page, from the party who started this topic: "no suppliment[sic] has been proven so far for benefiting PD."
I LOVE THIS WEBSITE!!!
Bear, Thank you for sharing this information. I saw the links on Silvestrov's stack before, but hadn't gotten around to study this in depth. Suffice to say I am very impressed. Oxidative stress caused by protein misfolding is a hallmark SCAs as well:
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ncbi.nlm.nih.gov/pubmed/289...
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So, NAC is definitely something I will add to my list of supplements!!
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Are you taking any supplements, and what has been your experience so far?
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Joe
Cancel that . . . copy of another post . . .
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-Bummer, looks like you can't take it orally and expect any result. The people in this trial took 6000 mg yes 6000 not 600 that the pill form has but 6000 with no effect. Bummer.
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Repeated-Dose Oral N-Acetylcysteine in Parkinson's Disease: Pharmacokinetics and Effect on Brain Glutathione and Oxidative Stress
Hi Park Bear !
I'm taking N-Acetyl-L-Cysteine, 500 mg pro capsule (from Thorne). Is that o.k. for you ? Which amount a day have they taken in the study ??
And thank you for all the interesting posts until now !!
I take 600 milligrams of NAC twice daily which is good for my prostate. Not sure which study you are referring to.
Thank you for your appreciation : - )
O.K., Park bear......>>>> I've searched a bit : it was in the study of Daniel A. Monti.
They did research on "cell culture"......
but I indeed also on the human beings 
>>>>>
The NAC was obtained from the Jefferson Pharmacy as Acetadote (Cumberland Pharmaceuticals). Pharmaceutical NAC is an intravenous (IV) medication most commonly used for the treatment of acetaminophen overdose. Acetylcysteine is the nonproprietary name for the N-acetyl derivative of the naturally occurring amino acid, L-cysteine (N-acetyl-L-cysteine, NAC). Acetadote is supplied as a sterile solution in vials containing 200 mg/mL acetylcysteine. The pH of the solution ranges from 6.0 to 7.5. Acetadote contains the following inactive ingredients: 0.5 mg/mL disodium edetate, sodium hydroxide (used for pH adjustment), and Sterile Water for Injection, USP. Acetadote doses were prepared for each patient by a trained study nurse. The dose was 50mg/kg mixed into 200ml of D5W infused over approximately one hour 1x per week. Subjects took the 600mg NAC tablets 2x per day on the days that they did not receive the IV NAC.
After approximately 90 days of receiving oral and IV NAC or being in the waitlist condition, subjects underwent a follow up evaluation, including repeat UPDRS along with the DaTscan SPECT.
BUT....THAT'S A LOT.......to achieve that without participation of your GP or neurologist and only by eating pills NAC....?.......possible ?
I did further review the recent study cited by Sunvox. I am now reluctantly inclined to accept their conclusion that oral NAC does not raise GSH levels in the brain and it was the IV infusion that made the difference for the Parkinson's patients. I have vitamin B1/thiamine on order based on discussions posted elsewhere at this site.
Hmmm, what should I do.............still order some tablets NAC ??
Or can you buy vials NAC on the internet ??
If you are seeking help for Parkinson's I would skip the NAC and look elsewhere.
With "skip" you mean, leave it ? Don't buy it and let it for what it is ??
Better to spend more energy and time on Vit B1 and Niagen ??
(here's also my mail address janphysio@gmx.de) ( are you living in European time zone?)
To elaborate on what I said above, I'm simply saying that the unsubstantiated, subjective claims of a single individual are - by definition - anecdotal. Vague hype like, "everybody who's tried it has experienced similar success!", fails to make it any less so.
The greatest offense, however, occurs when mere anecdote rises to become the standard by which even more grandiose claims of actual "disease reversal" are made. At that point the usefulness of this forum as a credible resource suffers.
For a sterling example of all this, one need look no further than the curious case of the ever vociferous 'johnpepper', HU PD forum's resident "PD reversal" evangelist (whose irrepressible drive to comment finds him here below).
Now 25 years since his original diagnosis of Essential Tremor in 1992 - and 15 years after writing the literary farce "Reverse Parkinson's DIsease" - he has yet to produce a single qualified neurologist to support his legendary tales of "PD reversal" - nor after all this time has a single devotee of his magical formula yet come forth with their own case of "reversal".
Nevertheless, JP continues to wile away his days trolling for desperate new PD devotees ("read my profile!") in hopes of selling another book or soliciting another attendee/sponsor for an upcoming "PD reversal" roadshow.
JP appears to be "grandfathered in" here at the HU PD forum at this point (kind of like the weird dude who lurks around the entrance of the amusement park) but we hardly need his unique definition of "disease reversal" (where it actually refers to "some improvement of some symptoms") to become a trend.
BTW: If it ever did occur, PD "reversal" could be empirically proven (through pre/post miracle diagnostics) but - to date - a grand total of zero cases ever have been.
Yes. An excellent example, but I too would use that as support of what I am saying, but first I need to recant on a word. I used the word "reverse". That was incorrect. A better statement would have been "alter". I agree there is no medication, supplement or therapy that can "reverse" PD and in as much as I am trying to ultimately help people I apologize for the use of that word . . . However . . . I do believe PwP can alter the course of their disease. For what it's worth I have edited my original post. Hopefully you will find the sentiment more palatable.
Now back to the point:
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I watched John's video and read the many comments and realized the usefulness of what he had to offer was minimal. Did JP alter his disease? Why yes he did. Does he have useful information for me. No he does not. Do the people I pointed to have useful information? Yes, I think they do. Are they all genuine? I have no idea, but they bring to light useful ideas, and I am certain there is some truth behind what they say.
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I am free from symptoms. I have SCA1 and a CAG count of 42 and am in the 80th percentile for where I should have severe symptoms. I had early symptoms, but mild enough not to be calculable on the ataxia SARA test unfortunately. I believe that for people in my situation who are early in their disease with mild symptoms there is hope of slowing or delaying the onset using existing knowledge, but that it takes a multi-pronged approach. My ideas have garnered the interest of Dr. Schmahmann and Dr Cudkowitz of Harvard Medical so much so that my ideas have become the talk of a future clinical trial and doctors in Boston are beginning to try certain aspects with their own patient cohort.
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You are right. No one has "reversed" PD, but this is a thread about supplements, and the question is can they help and what "proof" do we have? Sometimes we have solid research to support a supplement, but more often then not the only "proof" we get is an anecdote and some 20 year old research paper. It then is up to the individual to decide what to make of that information.
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I like to think that if we were to meet in a different setting I would welcome your knowledge and advice, and it is unfortunate that the internet and a few typed words can inform ones opinion of another these days. I am certain your intention is to help people here make the best of their situation. I hope you believe that my intention is the same.
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Joe
I agree, Joe. Communicating from the far-flung corners of the cyber realm does have its problems. I'm relieved to read your clarification. The use of the words "disease reversal" initially came as a surprise because, up until that single slip of semantics, I've found your input useful and well-informed. I have no doubts about your noble intent, however, and I wholeheartedly concur with your ideas on taking a proactive stance in addressing one's torments. I hope your successes in this regard continue.
Similarly, the model wherein ALL PD IS ONLY ABOUT DOPAMINE is a fictitious pretence and is Only Part of the PD pathology, albeit an important part but not the only important part.
[locus coeruleus ceruleus raphe nucleus basalis pedunculopontine nucleus]
Clinical trials can be tweaked. Anecdotal reports often guide research. Big parmas tendency to fudge is well described, well documented.
Peace.
Believe me, if you have a degenerative disease with no hope for a cure, you don’t care much whether the reported efficacy of a substance is the result of a massive study or an anecdote. You will try stuff that hasn’t been blind-studied, things that others say have helped them.
Many anecdotes often add up to a demand that studies of some sort be done. Sometimes, but not often as there are too many costs involved with too little return, studies will be done to see if something anecdotal actually works. I think of all the years the medical Pooh-poohed the use of Vit. E for heart health and the use of C and zinc to curtail a cold. Both were used by people who early on thought out of the box, found something that worked for them and used it. Conversely, I am reminded of all the people who took statins to their detriment, based on ‘empirical’ evidence. Some realized they were in trouble and stopped the drug, regardless of the ‘evidence’.
Even supplements that are declared efficacious by adequate studies rarely, if ever, affect everyone equally. A substance needs to show a ‘sugnificant’ difference in a substantial but not all participants. The same is true in PD....there are so many variables in causes, co-morbid conditions, the body’s physiology itself and individual needs, it is virtually impossible to develop a supplement which is a magic bullet.
Is there a supplement which ‘cures’ PD? I doubt it. Are there supplements which help the PD patient to feel and function better? Absolutely. If nothing else, taking supplements supports systems which are constantly being torn down by the stress of the disease. There are supplements which help control symptoms in varying degrees...I think of l-glutamine for the chronic problem of constipation suffered by many PD patients....hardly ever recommended by docs but highly efficacious as a healing agent with benefits never achieved by laxatives. Are there studies on it? Maybe, but the use of it is due to anecdotes, not doctor recommendations, unless your doc is enlightened.
Our case is anecdotal....my husband took enormous amounts of supplements over 15 years and there was no doubt they improved his function and quality of life....every doctor marveled at the effects. I had to spend hundreds of hours researching, experimenting, spending lots of money and sometimes discarding supplements. There were those which worked within hours ( Theanine for depression, magnesium for leg cramps, niacin for hallucinations, isoquecetin for too much histamine response and on and on). Others which acted more long term, we just had to take on faith in small studies or anecdotal experience from others. What we used may or may not work for others with the same or different symptoms.
Supplements are made to satisfy the needs of desperate people people who will do anything to overcome Pd. Anything, that is other than exercise. Exercise takes effort and we son't think we can make that effort. But think about it: If you can walk as fast as you can, albeit ten feet a minute, and yo keep doing that every day, trying to walk a bit further each time, you would be surprised to find that you are able to walk a hundred yards in no time at all. Carry on and soon you will be walking for one hour. WOW!! Wouldn't that be great?
Can we classify mucuna as suppliment or medicine
May depend upon what country you're in and which pharma corporations donate tothecountry's medical schools.
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