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PDCurable
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It seems to me the more the media make people aware of certain illnesses there are people out there who will try to sell anything whether it is scientifically proven or not.
How ever people can do this to many who are vulnerable and live with hope making promises that Scientists have been researching for years.
I am all for self help, and anything that can ease, but to say cure?
It really is to my mind criminal, cruel, and downright nasty.
PatV in reply to
Yes, I agree. I'm all for positive thinking, the placebo effect, etc. and so forth. I've tried all of the alternative therapies described and they addressed the SYMPTOMS marvelously. But guess what! I still have PD! And it progresses! Everyone says I am amazing and I "look really good". Could I grow another thyroid after thyroidectomy thanks to thyroid cancer? Not any sooner that I could grow another head. Which would be great if the second head had functioning dopamine receptors in the BRAIN!
In defense of ketone therapy, we do not require a whole new head:
A researcher in Canada, Stephen Cunnane, who is investigating ketone therapy, has a ketone PET scanner and also does a glucose PET scan back to back, studying Alzheimer's. He has found that most of the areas of the brain can use glucose perfectly well, and also that the areas that do not take up glucose DO take up ketones just as well as a healthy young brain.
in reply to PatV
I've just discoverd I have an overactive thyroid as well as PD I am taking Carbimazole but not any PD medication. I could kid myself my tremors are thyroid related not PD but I suppose I am just grasping at straws.
I have gone down the alternative route for years that is why I'm not on PD medication and have coped so far. Now this thyroid problem which can cause tremors and other similar symptoms and I am feeling a bit lost and losing my usual positive attitude.
It was good to read your post, it gave me a kick and I'm now feeling more positive.
Thank you.
I think any kind of organized or commercial activity should be removed. Chiropractic, homeopathy, and many other 'alternative' therapies are worse than useless. Ketones are not the answer. They may prove to be but as of now, my husband isn't taking them and believe me he is troubled by his symptoms from PD as anyone else.
What I value about this site is people's personal responses.
If someone asks about a med, for example, and one person said it was a disaster
and s/he got off of it asap and the next person said it was the best thing s/he has found
so far, I can really use that info. Recommendations for alternative therapies or
a blog that does the same, is not helpful, to say the least.
Perhaps it was my fault to post in an alternate medicine thread but ketones have been mainstream science for a very long time:
Ketones were first discovered in the urine of diabetic patients in the mid-19th century; for almost 50 years thereafter, they were thought to be abnormal and undesirable by-products of incomplete fat oxidation. In the early 20th century, however, they were recognized as normal circulating metabolites produced by liver and readily utilized by extrahepatic tissues. In the 1920s, a drastic "hyperketogenic" diet was found remarkably effective for treatment of drug-resistant epilepsy in children. In 1967, circulating ketones were discovered to replace glucose as the brain's major fuel during the marked hyperketonemia of prolonged fasting. Until then, the adult human brain was thought to be entirely dependent upon glucose. During the 1990s, diet-induced hyperketonemia was found therapeutically effective for treatment of several rare genetic disorders involving impaired neuronal utilization of glucose or its metabolic products. Finally, growing evidence suggests that mitochondrial dysfunction and reduced bioenergetic efficiency occur in brains of patients with Parkinson's disease (PD) and Alzheimer's disease (AD). Because ketones are efficiently used by mitochondria for ATP generation and may also help protect vulnerable neurons from free radical damage, hyperketogenic diets should be evaluated for ability to benefit patients with PD, AD, and certain other neurodegenerative disorders.
Furthermore Stephen Cunnane is Canada Research Chair in Brain Metabolism Research Center on Aging, Univ de Sherbrooke, Quebec Canada.
I respectfully submit that you should be challenging your neurologist about why ketone therapy is not being developed, and why poisonous drugs and intrusive brain surgery are the only alternatives offered by mainstream science.
I do respect your choice not to participate in the early stages of development, it is very understandable.
Just because you believe in something, does not make it true...
Call me what ever you'd like, but I simply cannot buy into any snake oil miracle cures whether it's ketones, coconut oil, or what ever, until I see positive results accompanied by convincing research. If any of these so called cures would actually work, every "mainstream science" laboratory, big pharma, etc. would be all over it like white on rice!
I'm not saying that I disbelieve the efficacy of alternative medicines for improving someone's symptomology, but an out and out cure for PD - I'll believe it when I see it. Yes, it would need to convince me of it's ability of it to stop the progression, undo our extant physical and mental deterioration and reactivate the brain's ability to manage dopamine properly...a damn tall order!
I respect your choice to await the results of clinical trials. It is perfectly valid.
I have already given an example of a mainstream science laboratory that is doing ketone research. Further I just ask you to consider for a moment why "big pharma" might not be all over ketones like white on rice:
Please watch the attached ctv national news video on coconut oil clinical trials for the answer. I think the part I'm referring to will jump out at you.
I agre srarndt and thank you. Satwar, thank you for not getting defensive. I appreciate the tone of this discussion here. I do not know much about ketones but am reacting to the stupid diet put out by a millionaire, Dr. Atkins, to help with weight loss. It was no-carbs and only fat and protein, as much as you want. This puts a person into a keytotic state, completely upsets a person's metabolism and is very hard on the kidneys. They have to excrete all that excess ketones.
But as srarndt said, the bar is pretty high. I don't see this as early stages unless there are medical researchers in recognized centers doing double blind testing and retesting. It's $$$ and time consuming. I trust my husband and other neurologists to protect us from poorly designed testing, invalid results, and provide him with prescriptions for medications with a proven track record.
Friends are recommending other PD sites and I may be leaving this one due to the open-ness to alternative medications. People here are asking each other how much coconut oil to use and vowing that it helped or didn't help then. We need to be careful what we put in our bodies and those of our loved ones. With a baffling disorder like PD, or course people are going to try to find cures on their own, but that's not sensible IMO. Ketones, coconut oil, these are fads.
I have watched the video and remain unconvinced by this theory.
All the video does is introduce a simplified explanation behind coconut oil and advise that a full clinical trial is underway. The clinical trial will have to speak for itself, and nobody can be compelled to accept the results. Science is about consensus building and is a very slow process. I hope I'm wrong, but I doubt if the gold standard peer reviewed status will be achieved in our lifetimes.. Until that time we can only do our best to sort things out for ourselves and be civil and tolerant of each other opinion.
The ultimate goal is indeed a very tall order, but I see light at the end of the tunnel where others see darkness. I may be wrong, but I have a right to make my own decisions. I am also the kind of person that walks the walk before I talk the walk, which is why I support the use of coconut oil. I am not offended when you call my use of coconut oil, or a diet plan I am following as "stupid", because you are merely expressing your opinion that you do not accept it, and that is your right.
I have never called anyone stupid...I tried coconut oil, too. It did nothing to help with any of my symptoms, but I do not consider myself stupid for trying it. Besides, I have come to like the flavor in much of my cooking. =)
If you look closely at the format of my post I am responding to quirkyme not you.
if you please refer back to my initial posting, I called Dr. Atkin's weight loss plan that put people in a state of ketosis, "stupid." I did not and would not characterize people trying a food or alternative treatment "stupid."
I said you called my diet plan "stupid", I did not say you called me stupid. I also said that I am not offended. I will now suggest that your choice of the word "stupid" is inflammatory and not appropriate in a cordial discussion. I do respect that you have very strong convictions
Please, I said Dr. Atkins' diet was "stupid" and it was an is. It involved eating a lot of animal fats. With heart disease being the #1 killer of adults in the USA, it was in good company doing so.
Coconut oil is another fat entirely, coming as it does from a tree.
Okay, perhaps the problem is that I have not made it clear in this thread that I am following a low-carb diet to determine if the elevated levels of ketones in the blood achieve an improvement in Parkinson's symptoms over the simpler method of exogenous ingestion of coconut oil. If I can achieve nutritional ketosis I will be visiting my neurologist for an assessment. It is my hope that we will continue to have assessments for many years to come.
My above concerns about the use of the word "stupid" still stand.
As a former RN I was angry at how many people I knew, some with minimal or no problems with weight, took up Dr. Atkins' diet, swallowing his half-baked ideas instead of going to their PCP for a physical and a diet and changing their lifestyle of eating processed food and not exercising. He didn't care that people could be harmed by it. He was a huckster who wanted the fame and millions his books brought him. I think he was unethical.
What you ingest is up to you. I hope your neurologists, and your, findings turn out to be helpful. If you are using a scientific method, you will be as happy to have either a positive or negative outcome. That means that a bit more knowledge has been established and your 'experiment' has helped others, if not yourself.
Fast forward, what? thirty years and no one talks about Dr Atkins. His ideas were repudiated by doctors and dieticians, just part of American faddishness about food. Now it's olive oil and the Mediterranean diet, which millions have lived with for centuries before this time of increased PD. Or it's vegetarianism. Or gluten free. I don't know the answers but it does seem to me that you are proceeding ethically and intelligently, while Atkins was a fool and a fooled others into buying his claptrap books.
Be angry with me, if you want. I'd like to make peace and move on.
The low-carb diet book that inspired me was "The Art & Science of Low Carbohydrate Living" by peer reviewed scientists Phinney & Volek (2011). They have used all the latest nutritional science to support the low-carb living style and the advantages of nutritional ketosis.
My own experience with improved PD symptoms from ingesting coconut oil was very positive, but the response was inconsistent and I couldn't understand why until Phinney pointed out that ingestion of carbohydrate sharply suppresses ketone levels in the blood. Since I believe that ketones are responsible for the improvement in PD symptoms with coconut oil (currently under clinical trial @ USF), then nutritional ketosis should bring more consistent and improved response to my PD symptoms.
"Yes, it would need to convince me of it's ability of it to stop the progression, undo our extant physical and mental deterioration and reactivate the brain's ability to manage dopamine properly...a damn tall order!"
Yes it is a tall order. According to the MJ Fox website, there is nothing that reverses or even slows the progression of PD, including the expensive drugs! There has never been a scientific trial of DBS, but most accept it as a valid treatment.
"I simply cannot buy into any snake oil miracle cures whether it's ketones, coconut oil, ..." You have lowered the tone of this otherwise cordial discussion by resorting to name calling. That is not constructive.
I have to say that I agree with fwes"s comment above about the tone of some opinions being expressed regarding the search for alternative treatments. As one who originally started the coconut oil trial, but changed my mind early on because of doubts does not mean that I do not respect those who continue to take part; on the contrary, I have huge admiration for them all, not only for experimenting on their own bodies, but also for withstanding the costs involved themselves. In my opinion, none of this is without risk, but they are being quite open about what they are doing and helpful to those wanting to tread the same path. I also respect those on this forum who have subjected themselves to DBS and willing to share their experiences with others considering this route and in need of encouragement.
So, please, do not let all this good stuff going on degenerate into two camps as no one has all the right answers, but they all have the right to pursue a course of their own choosing.
Regard to all
Norton
Well said, Norton. I do not see myself as being in any "camp"... back in the day I also gave CoQ10, and various other supplements serious attempts, and I have had DBS, too.
Thank you Srarndt for telling us a little more about yourself. When we get down to it, there are a lot of brave people on this site who have experimented on themselves and undergone major operations all in the cause of improving their lives and willing to share their experiences with others. I include PwP such as yourself, fwes, Satwar and many others when I say this. Let us continue to support each other in our pursuit of a cure and if that seems a long way off, then pushing forward at the very least.
Thank you all.
Norton
I disagree with fwes about 'lowering the tone....' Some alternative treatments are dangerous. Some supplements are made from shoddy ingredients by those out to make big bucks. If you look back in US history, there have indeed been 'snake oil salesmen' who moved onto the next town before people got sick-- or didn't get better. I think we need a healthy skepticism and an attitude of 'buyer beware.'
quirkyme and srarndt
LouAna Pure Coconut Oil: $6 per quart at Walmart, Is that your idea of BIG BUCKS?
My Mirpex ER costs $16 per pill.
If we are tempted to believe in conspiracies,is it more likely to think that the Coconut Oil Cartel pays people to smear drug companies or that drug companies pay people to smear homeopathic treatments?
I am a professional scientist who is retired from MIT and who has served on a National Academy of Sciences Panel. I have personally observed several cases where individuals have had significant symptomatic relief from Coconut Oil. (I have never claimed curative powers; you have put up this strawman.) Five doctors have observed and attested to the improvement in me.
.From my Nov. 2013 Exam at Mayo Clinic:
"...He started using coconut oil and has gradually raised the dose to 10 tablespoons per day. He started that in April and feels it has improved almost every aspect of his motor
and non-motor features of Parkinson's. He has improved gait, facial expression, and smell. ...
PHYSICAL EXAM:
....His motor UPDRS score equals 16.
IMPRESSION/REPORT/PLAN:
At this time, it is my impression that Mr. .... is doing quite well from a Parkinson's disease standpoint. His motor score is down a little bit from 22 with no change in his Parkinson's medicines and the addition of the coconut oil. I have explained to him that it is very much unclear how much of an effect the coconut oil has on Parkinson's disease, but as long as his internist feels it is safe to be using at the current doses, then I do not see a problem from a Parkinson's disease standpoint. We spent a long time discussing coconut oil and the overall features of Parkinson's disease, and how best to try to approach treatment.....For now, no other changes are going to be made. "
You freely banter "snake oil". Your evidence?
Until you present your evidence that it does not work for anyone I will suspect that you are using "name-calling". to smear the treatment.and that you have no other argument to present.
Constructive discussions on this site often include referenced information or relate to personal experiences. I trust that you will rise to this level in future communications.
it is up to the researchers to do scientific research including double blind tests. As you know, anecdotal evidence proves little. Again, I was speaking for myself and my husband. We trust my husband's medical team, and the info we get from one of the top PD specialists in the world. Neurologists make no money from prescribing medications. As for the pharmaceutical industry that's another discussion.
I was surprised when I started on this site to see people asking each other 'well, how much coconut oil do you take and how often.' (etc. etc.). None of us has full medical knowledge and we shouldn't be in the business here of 'prescribing.' Not too long ago it was CoQ-10 and that was expensive in the large doses that were said to be needed. Now, not many people are taking or promoting it here. We may want to help others and share this info but we don't have any special information beyond our own individual experience.
I wish you well as you move forward.
I would respectfully submit that significant anecdotal evidence provides scientific researchers with something to focus on. That's how the coconut oil clinical trial @ USF came to be.
Scientific researchers also need money to conduct trials, which is particularly challenging when the sponsor of the trial does not have deep pockets or does not stand to make a profit from a successful conclusion of a trial.
I would respectfully submit that each one of us are masters of our own body. If you listen carefully to a doctor or neurologist they are not dictating to you what you must do, but giving their opinion as to what you should do. We make the final decision on what to do with our body, and we each have the right to look for and use our own weapon of choice. We must respect each others' choices because we each have the right to make our own decisions.
I think we have to be cautious in applying the term "miracle cure." I take coconut oil because I can observe some benefits.. I also do my exercises faithfully and have physiotherapy regularly because I can observe some benefits. These are not "miracle cures" but they are part of a comprehensive treatment programme which includes my prescribed doses of Stalevo and Mirapex.
here's info. critical of Dr. Atkins and his low carb diet. Again, he is only dealing with quick weight loss, whereas yours is a thoughtful managed approach using yourself as subject. These critics certainly found Atkins Diet both stupid and dangerous.
"In his dieting approach, Atkins suggests that the "carbohydrate is the bad guy", and through extensive research, he claimed that it caused the body to overproduce the hormone insulin, a condition called hyperinsulinism,[11] which metabolizes blood glucose and thus makes people feel hungry.[4] Many doctors and nutritionists decry this explanation as an oversimplification of the metabolic processes, however, and argue that Atkins' claims that human beings did not evolve to properly digest carbohydrate are unsubstantiated, particularly because, they claim, the human diet has relied on carbohydrates to supply energy for thousands of years, with meat and dairy consumption being only sporadic.[12] Further, they discredit Atkins' notion of "hyperinsulinism", claiming that the state he describes is better known as type 2 diabetes, a disease that is brought about by obesity and not being the root cause of it.[12]
"Critics also pointed out the potential for long-term health problems associated with a diet low in fiber due to the program's restrictions on fruits and vegetables in the early weight loss stages. A balanced diet, they argued, should not require a person to supplement its meals with vitamins and other supplements.[4][12] Atkins admitted that he could not fully explain the remarkable weight loss achieved by those who followed his eating plan, and he never published his conclusions in a peer-reviewed medical journal. Other nutritionists studying the effects of low-carb dieting overall suggest that the extreme weight loss might be unrelated to the restriction of carbohydrate and is instead related to the natural calorie restriction that comes with the feeling of increased satiety in a high-fat diet.[12]"
Despite the obvious criticism however, Atkins' work inspired a whole new tendency in dietetics with many other companies releasing low-carb diets and low-carb foods as well.[13]
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