The latest “Annals of Internal Medicine” has a report on the effects of Supplements for cardiac problems, finding them all but one useless.* The study involved 24 supplements used by a million people, and mirrors another similar study in 2013.
I suspect the same is true for supplements taken for Parkinson’s, not that this will stop anyone from using them.
As a proud Canadian, I have to boast that Canadians have the record for taking added vitamins, which led someone to comment that Canadians pass the most expensive urine in the world.
* which supplement showed a weak benefit? It was Folic acid, but seemed to show a slight benefit only in China where diets may be deficient.
I do not take any supplements or vitamins, and I eat whatever fancy, and do not exercise. I get a great improvement from Madopar, called Prolopa in Canada.
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condor39
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This is only my opinion, but I tend to agree that supplements and vitamins are not necessary or even helpful for healthy people eating healthy foods. However, based on blood test results showing that I have decreased inflammation markers (homocysteine and CRP among others) and increased my Vitamin D levels, I am confident that some supplements and vitamins are helpful to me, including B1, nicotinamide riboside, B12, D, glutathione, butyrate, resveratrol, turmeric, and Omega 3's. There's at least some study suggesting that each might be useful to PwP. Another thing to keep in mind are our age differences. Our motivations and concerns are different at age 40 than at age 60 and they're different at 60 than at 85. Just my thoughts. The one thing I know for sure is that I am not content to address only the symptoms. I may be wasting time and money on supplements, but at least I am trying. I hope to live at least another 30 years.
The report refers to cardiac problems. In my opinion, as far as PD is concerned the situation is less clear.
First, we don't know the aetiology of PD, so how can we know that all supplements are not therapeutic? Rather, it is the case that we don't have evidence that they do work. And even if some do work, we don't know which ones they are.
Second, even if they don't have a true therapeutic value, there is the placebo effect to take into account. This may make some supplements worth taking nevertheless.
We don't know whether a supplement is therapeutic or not. I have coined a word for this: "therebo" (from possible THERapy or placEBO).
For instance, vitamin C is a therebo for PD. Levodopa is a therapy.
It seems rational to me to hedge your bets. Do your homework, and select a supplement or two which have the best chance of success for you, are cheap and, most importantly of all, have little chance of doing harm. If you feel that one is not working, you can replace it with another. This will at least act as a placebo for a while. Since, there are a huge number of therebos, you will always be able to find a new one to top up your placebo. You may even get lucky and find something that really is therapeutic.
For what it's worth, my only current therebo is live yogurt and kefir.
I also do a lot of walking, but I think that there is enough evidence of benefit for that to be considered a therapy.
Medical journal reports like this are commonplace. The ones I have gotten around to taking a close look at were extremely biased and came up with invalid results. See my writings:
Junk Science, Bad Reporting Propagate Unhealthy Misinformation Regarding Supplements
A recent survey of the literature entitled "Supplemental Vitamins And Minerals For CVD Prevention And Treatment" alleged supplements were not useful for the prevention of cardiovascular disease. What they did was to find one weak study that failed to find a significant relationship between vitamin D and improvement in cardiovascular disease. This occurred because they only gave the patients a big dose of vitamin D once every four months. This dominated the survey results and they falsely concluded vitamin D was worthless. They also ignored vitamin K, which is one of the most important supplements for the prevention of cardiovascular disease.
How Big Pharma pollutes the scientific record and propagandizes doctors.
Bisphosphonates (Fosamax, etc.) increase fracture risk and should not be on the market.
Statins are effective but dangerous.
Vitamins D and K and a couple of minerals improve bone strength, reduce fracture risk and prevent hardening of the arteries. In so doing they result in better outcomes than both bisphosphonates and statins.
Other hazardous meds and how you can protect yourself.
Wow...very impressive park_bear! Thanks for posting this again, I have searched before and couldn’t find your writings. Excellent!
I’m happy for you that you sit and eat whatever you like condor39. Probably if my husband was 85 he would happily continue to eat his cakes, biscuits and other junk food that he was brought up on, as well as take his madopar, but as he is only 60, he is planning on being around for another 20-25 years, so at the moment the B1 ‘supplement’ is the best thing that has happened to him since starting on the levodopa. He has also managed to cut the dosage of the madopar in half!! I wish you luck with your regimen.
Jenny, thank you for a great reply. Trying to look into B one and I know there’s a myriad of comments about it but when you were new it seems a little bit Diverse. I know the dose is flexible and I’m a nurse so I know I can figure it out but was just curious how much your husband is taking as I’m his age and also did you have to have Thiamine hydrochloride or just regular Thiamine? Not sure if there’s a difference but I keep reading that or you can only take thiamine hydrochloride? Where did you find it? Thank you so much. Liz
Hi Liz. Definitely the Thiamine HCL. He has been using the powdered form from NutriVita, as we thought it was a more pure form (no fillers) although others on this forum are using tablets with great success...just our personal preference as he was having difficulty swallowing tablets at the time (that is now resolved, thanks to B1!)
Dr Costantini had started him off on 500mg x twice daily. This was based on him being 6ft, 60yo and 68kgs. We are still tweaking the dose, but at the moment he is on 450mg x twice daily (before breakfast and before lunch..if taken later in the day it may cause insomnia).
If you would like to send me a private message I’d be more than happy to answer any questions to the best of my knowledge and pass on information that ‘a former member’ Art had spent hours (hundreds??) putting together.
I so agree, just found out that at our PD Support Group Meeting everyone is getting a free lunch. Asked who the speaker was and it is a pharma rep. They will do anything to keep us on their meds.
They make a lot more money from dopamine agonists than from levodopa, so expect the rep to talk about how great dopamine agonists are and how bad levodopa is. And of course supplements will be regarded as useless.
If you want to have some fun come prepared to talk about the studies linking dopamine agonists to orthostatic hypotension and impulse control disorders.
I think you just proved beyond reasonable doubt that neither doctors nor Big Pharma are perfect.
So therefore, don’t you believe any doctor or any drug company? I will believe that some doctors and some companies are crooked, but I will not believe that they are ALL heartless.
You are ignoring the tremendous advances in medicine by doctors and by drug companies in my lifetime.
I only only wrote, “I suspect” supplements for Parkinson’s are useless . I am easy to convince otherwise, all I need is evidence.
A fervent belief, however sincerely held, is not evidence.. Nor is an article in some crackpot journal, or long winded article.
Readers of this site will continue to take all their supplements, and good luck to them.
I never said, nor implied, that all doctors are crooked or heartless. I personally am blessed with excellent medical doctors.
I do not ignore medical advances. I believe being properly medicated is important for Parkinson's patients and have not been shy about saying so on this forum.
I agree completely that is all about the evidence not some kind of attitude. I already provided the evidence - the writings of mine all link to the relevant medical journal studies. You tried to dismiss the evidence by making a groundless claim about "crackpot" journals. However, you show no evidence of actually having looked at any of the research referenced. Sorry, but published studies in proper medical journals take precedence over your uninformed prejudices.
We should be able to discuss this without being rude. I am going to assume that your comment on “uniformed prejudices” is your quaint way of saying you disagree with me.
Let me sum up:
I quoted a very respected medical journal which had an article showing that supplements were of no use. I “suggested” that the same was true for supplements for Parkinson’s.
Your response was that you had seen articles like this, but did not trust the ones you read. (Why read them when your mind is made up? - and you call me prejudiced?)
Your reply went on to mention about a dozen items where physicians or pharmaceutical companies were wrong about something. When I replied you had discovered that physicians and pharmaceutical companies were perfect, you answered that your doctors were great.
You then mention studies in proper medical journals, by which I assume you mean ones that agree with you?
Let me try again. I suspect that supplements are useless in Parkinson's.
I really, really, hope this is not true. I am just a keen as anyone to get help for my Parkinson’s. But I do not chase after any of the hundreds, and I mean hundreds, of supplements mentioned on this site. The fact that there are so many suggest to me that none of them work.
(Could you give me a reference for, say the use of celery seed? That one got by me)
It is funny you should mention "We should be able to discuss this without being rude"...
It is getting more and more annoying to read your cynical criticism of just about everyone who is looking at anything but standard medical/big pharma.
We all know by now that yourself and family members are medical and big pharma representatives, as you have written about it in your replies. This is a forum so you can express your views like everyone else. HOWEVER, it doesn't have to be accompanied by all this negative, cynical criticism.
All of us PWP already put up with doctors and or neurologists who push us their levodopa. Please stop blaming people for looking for something more than a 50 some year old med that only hides symptoms for a while, then stops working and leaves you with dyskinesia on top of it.
Although most people accept your bullying, I have been happy lately to see more and more are answering you.
Condor - its amazing to me that you never see how rude, patronizing and confrontational your comments usually are. And then you have the nerve to accuse others of being rude, when they are only responding to your negativity.
Regarding your reference to the medical journal article alleging supplements were worthless – please provide a link. Here is the link to the study on celery seed for Parkinson's: spandidos-publications.com/...
While we are on the subject of medical journals, your comment: "proper medical journals, by which I assume you mean ones that agree with you?" shows a lack of understanding. It is my observation that proper medical journals do not "agree" or "disagree" with a particular point of view. They publish all kinds of research. Some of it appears to be unbiased and valid, and some is demonstrably not so.
You did not read my actual writings so of course you misinterpreted what I said. It is not that I did not trust some journal articles, it is that I demonstrated the studies in question were biased and the results were invalid. You would not know that because you were too arrogant to look at what I wrote. I am sorry if you think I am being rude, but from what I can tell my comments about your attitude are accurate. I would be happy to be proven wrong.
The link to Supplements and heart disease I just read, it is in Annals.org, 9 July 2019.
Your reference to celery seed, from a study in a Chinese medical College, published in a Medical publication in Crete, a publication owned by its Editor in chief who was dismissed from the University of Toronto for fraud.
The study you quote is a very small study, and I note one third of the subjects receiving the active drug dropped out from the study. Hardly a ringing endorsement. At the most it might be considered a subject for further study.
Your other reference of celery seed and stroke concluded that it might, repeat might, be of benefit.
I think we should move on to other subjects. I will admit to being a cranky old man, but I have earned the right to be one. You think supplements are useful, and I doubt it - we can leave it at that.
Vitamin K is essential to get calcium out of the bloodstream and into the bones. An insufficiency of vitamin K results in the double whammy of hardening of the arteries and osteoporosis.* To test the effect of vitamin D plus calcium without including vitamin K is a fatal error for validity of the study of the effect of vitamin D - that extra calcium is prone to deposit in the arteries and aggravate cardiovascular risk, just as the study found. Vitamins D and K are the key supplements involved in reducing cardiovascular risk. As to the other supplements it is no surprise that they have little if any effect on cardiovascular risk. It does not follow that they are worthless for other purposes.
It is of interest that they report reduced fat intake had no significant effect on mortality or cardiovascular disease outcomes. There is good evidence in support of this result from other sources.
Regarding celery seed extract, the allegations against the journal editor are 40 years old and were never proven. In any case it is not the journal editor but the researchers, the quality of their research, and the end result for patients that count. More on this below.
No treatment is perfect. It seems celery seed extract can cause an increase in dystonia. This happened to me after several months, but has improved after going off the treatment for a few days. This may have been the reason for the dropouts.
As to study size, attributing significance to a study strictly on the basis of the number of patients involved is a simplistic and incorrect view. A trial with a large number of patients that barely squeaks by with, say, p=.047 should be regarded with skepticism - beating the p<.05 standard is not an ironclad guarantee a treatment works. A trial with a smaller number of patients that achieves a high level of significance, p<.01 in this case, is on much firmer ground. The charts they provided and that I reproduced here:
tell the story - the distance between the results of the treated versus control patients is vastly greater than the error bars.
Final proof of the pudding is the results for patients. I have been taking celery seed extract for a few months. I had dinner with a friend last night who I had not seen for a couple of months. She remarked that at our prior meeting I had an obvious tremor, yet she currently saw no tremor at all.
----
* My writings on the effect of vitamins D and K and calcium on cardiovascular risk, with journal references:
Vitamins and Minerals for Bone Health and Reduced Risk of Cancer
Details of the vitamins and minerals that improve bone strength, reduce fracture risk, prevent hardening of the arteries, improve cardiovascular outcomes, and reduce cancer risk.
Hello park_bear. Firstly I don’t have PD, but my husband does. I have severe osteoporosis that I haven’t addressed for several years due to researching for my husband’s depression and subsequent Parkinson’s. Now that he is sorted (THANK YOU DR C AND B1!!!) I have been reading your writings with great interest and am wanting to reverse my osteoporosis... lumbar spine (T-score -3.4) femoral neck (T-score -3.6) and the BMD was done 5 years ago! Would you mind if I picked your brains, please?
I have just ordered the Vitacost Ultra Vitamin K (thank you for the link). I have started on a Vit D and zinc picolate cream to rub on my skin as Vit D tablets make me nauseous. Not sure how much boron to take to build my bones...would the 3mg per day in Swanson’s Triple Boron be adequate? And what about calcium? Argh...sorry so many questions!
If you have the time, ANY information you can give me will be greatly appreciated!
I believe 3 mg of boron is adequate - that is what I take.
There is so much calcium in my diet I have no need to supplement - the rice milk and almond milk that I use have plenty of calcium plus the occasional calcium based antacid plus leafy greens. Check your own diet and decide for yourself.
One additional thing I have noticed which helps my fingernails is glucosamine condroitin. As you may have gathered from my writings I take fingernails as a proxy for bone health.
I have today bought the glucosamine & chondroitin (with boron) tablets, as per your suggestion.
And thank you for the reminder to keep an eye on my fingernails.
I feel my calcium intake would be adequate also, as I drink almond milk (with turmeric and honey...yum!) daily as well as my leafy greens.
Could I be so bold as to ask if you know anything about bronchiectasis? I was left with this chronic lung condition after 2 bouts of pneumonia last winter. There is no known cure. I think I’m taking advantage of your good nature and your wanting to help people, but you seem to know so much about many things that the doctors aren’t aware of, so thought I’d ask anyway...sorry. If this is an inappropriate question to ask on this forum, I totally understand and thank you for everything you’ve done to help so may people with your writings.
If you browse these results I think you may find some useful information.
In this process you will encounter terms you do not understand. Have patience and Google each one of these terms. After a while you will be able to read this literature just like a pro.
Neurodegenary diseases are different. In fact it is enough to have a chronic lack of b1 or B3 to develop beriberi or pellagra. Are they useless but we can't do without them? I suspect that this is not the case for PD.
I sometimes think our expectations of supplements are too high. I don't think reducing oxidative stress or inflammation or spiking blood glucose will actually diminish our tremor/symptoms, but I do believe that as other illnesses, deficiencies, and imbalances accumulate and worsen, they do accelerate the progression which further worsens those conditions creating a feedback loop. So, when we reduce the severity of these other conditions, we may be reducing the rate we would otherwise progress at.
If we can afford supplements and other therapies, there is no reason not to take them -- because on our deathbed, we are not going to wish we had more money, but we will wish we had better health.
According to your experience B-1 has helped you with Parkinson's. The title of this post is "Supplements Useless", which is an assertion that no supplement is good for any purpose. Your experience refutes that.
Different supplements are good for different purposes. Supplementing vitamins D and K improves cardiovascular outcomes and reduces bone fracture risk. Supplementing niacinamide reduces non-melanoma skin cancer risk by 30%. Celery seed extract has been shown to improve Parkinson's. All of these results have been demonstrated by proper studies published in medical journals.
According to Laurie Mischley's study of lifestyle factors that affect PD progression, following some 2000 PD patients over a number of years, I think 6-8 or so, the supplements that appear to have a positive effect on progression are glutathione, CoQ10, Fish oil, and Turmeric/Curcumin. She looks at many factors and it may be that the same people who take supplements also exercise, eat a healthy diet and reduce stress, so the supplements aren't the factor that helps. Nonetheless, it seems a good idea to me to use them prudently as part of a program to try to slow progression.
The most effective protection from cardiovascular disease is to avoid high blood pressure, otherwise known as essential hypertension. There are only two ways of keeping to optimum blood pressure. One is regular exercise, the other is to use an electrolyte balance capsule such as ion extra.
The effect of prolonged endurance exercise on slowing PD is beyond dispute. You are doing yourself a disfavor by not engaging in tough exercise. It is one thing that appears to be potentially neuroprotective.
A great question is to ask those internal medicine doctors how much training they’ve had in nutrition. Last I checked the main training was half an hour.
Me as a nurse that is also true they just basically said this is a carbohydrate, and a protein. Because I ended up with Lymes I was on a steep learning curve and found out things that have been around for years but just never got marketed. If you really want to learn a lot about plants and healing my favorite author is this Stephen Herrod Buhner. He has written over 25 books in his lifetime on the subject and is very knowledgeable.
Condor, our knowledge of medicine and healthcare doubles every few years.
Most of the links shared on this forum are to articles and studies within the past few years and with each passing year, traditional healthcare practitioners become more aware and more respectful of the role of nutrition in our health.
Maybe follow some of these links to recent articles and studies about supplements. Might change your mind about some things.
PS. There are credible studies and papers which indicate the national cost of healthcare could be cut in half through prevention -- which is a reflection of lifestyle and diet. (Just a sidebar note. I read in the New York Times the other day that 71% of applicants to the military last year were turned down because they were diabetic or prediabetic which is also a reflection of diet. And those are 19-year-olds!!!)
Doctors like to think only a pharmaceutical could improve anything. That's how they're trained to think. Animals in the wild instinctively search out minerals which supplement their diet. Why would we be any different ? The amino acids, D3, B1 etc. that I take are notably beneficial for helping my moods (apathy esp.) stay more level. I have stopped periodically to test it out and there is no doubt they are beneficial. We are made from the elements of earth so it makes sense to me to supplement when we're sick.
Your first comment, about doctors, is wildly inaccurate. The second comment, describing what is essentially a clinical case study with reversal, is quite valid as far as it goes, except that it doesn't specify what was stopped ("reversed") in what combinations for how long followed by what effects, followed by what effects came after subsequent renewal (and for how long). If you tackled all these conditions by doing the changes such that only one variable varies for each condition, then your activity would be considered an "experiment," then needing only statistically required minimal sample sizes and reliability formulas each time (different subjects, or "people") and some other features such as clear, distinct terms defining each effect when present and absent, and making the conditions subject to "blinds" and "controls" (i.e., both experimenter and subject do not know what variables are under change and what variables are not)...which would render your inquiry much farther along the way to being considered trustworthy for many, not just one; subject then to something called "confirmation" and "replication" and "peer review," wherein experts try to defeat or dismiss or disprove your findings and their efforts collectively failing to do so, after which we could call your findings "science." and perhaps even "facts." These are why so many observations and results are hard to generalize past "works for me and only me."
You made a simple statement about what works for me into a complicated issue way over my head and probably for many other readers as well. How complicated can it get to feel good when "on" and lousy when "off". Going by Dr. M. Hintz's studies on depletions of amino acids with Parkinson's and/or use of levodopa, I'm taking what he suggests but in lesser amounts. (There are posts about his research if you do a search...) About levodopa ....do you think there should be more tests done to show if they are really "off" or "on" before we can believe it? I'm basically saying the same thing except I take a lump of them at once that keep me feeling on top of my apathy which, in itself, is extremely debilitating perhaps more so than other symptoms of PD. The only thing I hear from your reply is you're showing you're obviously more educated than me. Nothing is perfect. We just do the best we can and I support ParkBear in his reply. You refute your own statement but mislead others with a negative title.
Sorry I didn't mean to generalize. I hope you have information on the positive side but from my experiences with several GP's and 1 neurologist that was their outlook and I had some very negative feedback. I was laughed and even scoffed at for using the supplements I take. Once again, I didn't mean all doctors but I wonder how much teaching doctors actually get about supplements unless it's done on their own time? I know they are well taught about pharmaceuticals but some natural forms of supplements are as good as or better. If you think otherwise about what doctors share with patients more power to you and them. You don't get too many chances to get a good neurologist.
In treating Parkinson’s, there are some substances that work, and an infinite number which do not work. Learning is concentrated on things that are proven to work.
Just because some people think their particular supplement works, is not enough to add it to the medical curriculum. Once something has been proved to work, it is rapidly added to the learning process, including the daily bulletin we receive.
These supplements have unknown effects, unknown side effects and unknown ability to affect current medications.
There are several hundred supplements mentioned on this web site, and more added every day. Why would you be surprised if your neurologist has not heard of some?
In my innocence, I quoted a source which concluded supplements were not effective for cardiac conditions. I then wrote that I suspected that this might be true for supplements for Parkinson’s. This stepped on the toes of those convinced that their particular supplement or supplements, were effective.
Don’t shoot or insult the messenger, please prove me wrong.
Like most scientists I would be delighted to be proved wrong, and I will start taking the supplement.
We all have the same aim, to find successful treatments for Parkinson’s.
Unfortunately, sometimes we have to live with trial and error until we find the right mix. I can prove to myself what works or doesn't without someone's study. These are relatively harmless supplements I'm trying. Example: I am amazed at how easy it is to stay asleep on L-Theanine (along with Melatonin and Magnesium bis-gluycinate 200). So many of my friends won't try it because they "think" they need a pharmaceutical. There are so many amino acids that, yes, I would like to drop some for the sake of expense but so far the bunch works and not that expensive if you find the right supplier. (Canadian) Hope you find success in what works for you! I enjoy the replies even if they don't always agree because that's what make us think deeper. We don't step on anyone's toes but some of us put up a pretty good argument don't we? Love it!
Ultimately medicines and supplements are simply molecules. The difference is that supplements can't make any profits for medical companies because they are already out there and can't be patented. There is no incentive for medical companies to do research on these, even if they may actually be more beneficial than prescribed medicines. For instance on here there are a large cohort who swear by Vitamin B1. There is, however, an incentive for medical companies to downplay the effectiveness of alternative therapies as it would severely cut into their profits.
Annual US pharmaceutical revenues are over $600 billion, of which $20 billion gets spent influencing doctors, particularly by publishing articles in medical journals. Annual US supplement revenues are about $30 billion - a nickel for every dollar of pharmaceutical revenues.
Because all these invalid studies that attempt to bash supplements, including the one that you cited, just write themselves for no reason at all.
By the way, you never did respond to that refutation, which invalidates your original post that started this discussion.
And now in reply to your most recent uninformed statement, here is an example of an alternative treatment, proven to work in a randomized controlled double-blind study, with a superior adverse effect profile, and published in a reputable journal, that has not been adopted by medical doctors:
I am beginning to understand you. By “Invalid studies” you mean ones you don't agree with. And by “uniformed statements” you also mean those which do not support your theories.
The study you quote is interesting, but it is too bad they compared the triple herbs with oral steroids, whereas almost everyone prescribes inhaled steroids - which gets away from the side effects of weight gain and gastric irritation. Another study would be great.
I am not sure what you mean by “refuting “ my original post. I said I suspected that the Supplements suggested were useless for P.D. I still suspect that, but please, please, prove me wrong. I am just as interested in improving my Parkinson’s disease as anyone else.
On the belief scale, with scepticism at one end, and gullibility at the other, I am towards the scepticism end. I try to be open minded, but not so open that my brain falls out.
Inhaled steroids are contraindicated if someone is taking itraconazole.
You insist on repeating your incorrect conclusion that we merely have a difference of opinion. Not so.
One thing I will trouble myself to repeat is that it is no surprise that supplementing with vitamin D and calcium makes cardiovascular risk worse instead of better. Vitamin K is needed to transport the calcium out of the bloodstream into the bones. Without it, the extra calcium precipitates in the arteries causing hardening of the arteries. Based on this result, your conclusion that supplements are worthless is no different than concluding antibiotics are worthless as a result of using the wrong antibiotic to treat a particular infection.
The supplement combination that has been shown to improve cardiovascular risk is vitamin D and vitamin K together, which the study that you cite failed to evaluate. That study is invalid as to the merit of vitamin D supplementation because they used it in the wrong way.
I also provided you with a list of links discussing other invalid supplement bashing studies. You have apparently rejected these without actually looking into them.
I do wonder whether all medical students take a humility test. Those who score well are immediately ejected from med school leaving the remainder to become Doctors.
You misunderstand me. I am delighted when studies show that a new treatment works. But there are so many “promising “ treatments that fail on further study, I have seen so many “breakthroughs” which later get debunked.
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