Much has been said about the unproven c... - Cure Parkinson's

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Much has been said about the unproven coconut oil claims but little about the well documented and more promising curcumin

gleeson profile image
38 Replies

For over a year now, I've gotten daily "Google Alerts" on both coconut oil and curcumin. Most of the coconut oil alert links are to hype from those who make money from the coconut oil claims. But the reports on coconut oil for Alzheimer's are beginning to fade now that the TV doctor/hucksters have moved on to new fads. In contrast , the curcumin alerts are to scientific studies (now numbering over 4000) on its promising potential. Here's the one I got this morning:

Curcumin Prevents Cancer, Heart Disease, Alzheimer’s Disease and Obesity

Curcumin is one of a small number of super nutrients which has the demonstrated ability to dramatically lower the risk from cancer, heart disease and Alzheimer`s disease while influencing the storage of body fat by altering lipid metabolism. Curcumin is a natural polyphenol which is extracted from curry powder and has powerful antioxidant and anti-inflammatory properties. You can experience a multitude of health benefits by eating the spice in its natural form or by supplementing with a concentrated extract of active curcuminoids.(For the rest of this report, see bit.ly/17Jo5Qy

I've done several blog posts on curcumin and its promising extract BCM-95. See for example bit.ly/1aAdc4q.

I've no financial interest in curcumin (or blogging), My interest is in its potential to slow down my Parkinson's

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Norton1 profile image
Norton1

Hello Gleeson

This is an interesting post; I did a search on the Internet and found that it can enhance the production of the neurotransmitters Dopamine and Serotonin also, and that its bioavailability is improved significantly if you purchase it with Piperine added. Slowing down the progress is difficult to prove without an extensive trial; do you know of such research? Have you actually felt any benefit(s) since you started taking it? For those interested in taking curcumin, what strength and dosage do you recommend?

Norton

gleeson profile image
gleeson in reply toNorton1

Nice research Norton! You also hit the nail on the head about the basic uncertainty in taking curcumin. Since its promising potential is to slow down the progression of PD, AD, cancer, diabetes, etc., how can you determine if it does? I'm an example. I've been taking the enhanced curcumin (BCM 95) for about 2 years now. My PD seems to be progressing relatively slowly but is there cause/effect? Who knows? I was diagnosed 4 years ago and so I could still be in the PD "honeymoon." Also my neurologist and my physical therapist have both said I'm an "outlier" in taking an active role in managing my PD and aging. Most of the thousands of curcumin studies have been done with mice and rats and have been able to use control groups that are given placebos. When I get a chance, I'll try researching on studies with humans.for a future blog post

tlongmire profile image
tlongmire in reply toNorton1

I was diagnosed in 2010 and received quite a lot of information at that time from the Muhammad Ali Parkinson's Center in Phoenix, AZ. One of the books on nutrition specifically mentioned Curcumin and the potential benefits. Did you find Curcumin with the Piperine addded and if so where did you purchase? Regards, Terri

Norton1 profile image
Norton1 in reply totlongmire

Hello tlongmire

I am unsure who you want to reply to your question, Gleeson or me, but here goes anyway. I suggest you have a look on Amazon and look for Doctors Best Curcumin with Bioperine. Read first the reviews which will encourage you. This is a powerful nutrient, make no mistake about that.

Please note, I have no direct connection with Amazon other than as a customer. Another company selling curcumin is iherb.

Best wishes

Norton

tlongmire profile image
tlongmire in reply toNorton1

Thanks Norton.

The trouble with all these like Coconut oil is it is really expensive. There seems to be no proper indictation of doses to take, or how long it might take to make a difference to a persons condition..

As it seems now Coconut oil is going out of fashion how do we know the same thing might not happen with curcumin?

It is all quite confusing. I presume if extensive research had been done on these spices there would be mentioned an optimum dose to take.

I might give it a try. and will report back

gleeson profile image
gleeson in reply to

I've been taking a daily 400 mg curcumin BCM-95 supplement for about 2 years. Unlike coconut oil, curcumin is not a fad promoted by TV doctors.It's been called the "unsung hero" among nutrients" See bit.ly/1aAdc4q

Norton1 profile image
Norton1 in reply togleeson

Thank you Gleeson for answering the other part of my original question above about the daily dosage. I can see already that the question on whether or not to take curcumin or coconut oil is beginning to polarise. The way I see it is that there have been quite a few PwP who started to take coconut oil and some have found significant benefit whilst other have found no benefit. If I was one of the former I would continue to take it, but would be sensitive to any research in taking a saturated fat in large quantities, long term. As for curcumin, it seems that the initial good feel factor may not be felt, but as you say there are 'tons' of scientific research papers with positive conclusion, some of which also mention it's benefits where depression is present. As it should be, we do our own research, decide our route and take our chances based on the available evidence.

Norton

satwar profile image
satwar

I have come to understand that coconut oil therapy is but a branch of a much larger tree that for sake of argument I'll call ketone therapy. Ketones can fuel the brain extremely well, even portions of the brain that have become insulin resistant and can no longer utilize glucose (hence the hypothesis that ketones can "cure" brain diseases).

There are a least 4 methods of getting ketones into your blood stream:

(1) starvation (not recommended)

(2) exogenous supplementation (eg coconut oilha

(3) low carbohydrate diet

(4) vigorous exercise (post-exercise ketosis)

Of the methods above, I believe the most effective ketone therapy is going to be low carbohydrate diet, supplemented with coconut oil. I personally have benefited greatly from coconut oil, but I have also seen how quickly ingesting carbohydrate can destroy the positive effects (ketones levels are sharply inversely related to ingestion of carbohydrate).

To be sure this is not an easy fix, there are many challenges. The coconut oil story is far from over, it's just beginning

PatV profile image
PatV in reply tosatwar

Low carb diet is not recommended for pwp's. The amino acids compete with dopamine for absorption by small intestine.

satwar profile image
satwar in reply toPatV

Isn't that a timing issue ? I asked my neurologist once and that's what she said for people (not me) requiring high levodopa dosages. I don't eat any more animal protein on a low carb diet.

Apparently the substance has been widely tested on mice but on very few humans so where can the results be positive? Also there are too many ''Maybe's'' in the results of tests.

I for one do not know if our bodies are biologically similar to mice, though I do know mice are used extensively to test many drugs eventually used on humans but usually after many years of trials with humans etc.

I am not saying the substance does not work. but after all this hype on Coconut oil what is to stop the scientists from finding something else which may become fashionable in the near future.

I have found out that this Curcumin costs twice the amount the price of coconut oil.

so I wonder who is actually paying for the research?

I am sorry if I sound negative to anyone but Money can do strange things even to scientists with good intentions.

And we all know the Path to Hell is paved with many of them.

I am a born cynic until I can see actual Proof.

I have little faith in the doctors as it is, so my faith in a few experiments on mice will not make me think any better.

Judy-10 profile image
Judy-10

Has anybody tried taking both coconut oil and curcumin? We've been giving my dad 4 tbl of coconut oil a day for a few months for his lewy body dementia. The coconut oil wasn't as effective until we became precise and regular in the dose (the same amount every day at the same times.) Then we saw a taming of his dementia, which formerly was very aggressive at times. I'm wondering if we could give him curcumin as well, and perhaps that would offset the weight gain from the coconut oil?

As for cost, we obtain a large tub of Hain's organic, pure coconut oil from Sam's Club, a big chain in the North East of the the US. The tub is only $15.

gleeson profile image
gleeson

I think virtually all of the curcumin studies and reports are on its potential to slow the progress of a disease, and are not about alleviating symptoms

JohnPepper profile image
JohnPepper

I wonder how many PwPs out there, instead of looking for things to put into their mouths, have actually tried to see what EXERCISE can do for them? Are we all too lazy to give it a try? It doesn't cost anything and it gives positive results almost imediately! So, where is the problem? I know there are many PwPs who have physical problems with walking, but there must be many who don't. What is the reason why so few PwPs do it? How many of the PwPs who have tried it, actually put everythingn into it, and didn't just go for a stroll and found no benefit? Come on guys! Put something into the best way to slow down Pd or even reversing it. What is wrong with us all?

John

gleeson profile image
gleeson in reply toJohnPepper

Couldn't agree more. I've been writing a blog on "Aging and Parkinson's and Me" for 4 years now. I write about everything but otten about diet, exercise, meditation AND pills. When I look at the list of the five most popular posts, four of them are about supplements. The top two are a couple of my posts about coconut oil. But the one I use -- curcumin -- is third and gaining fast. Go curcumin! None of the many posts I've done on exercise are even on the top ten, This is just an example of how all of us would rather get help from popping a few pills than from taking a half-hour walk.

JohnPepper profile image
JohnPepper in reply togleeson

Applause! Why is exercise so abhorrent? Do we really care for our health or do we all want a quick-fix, which does nothing for us, other than maybe the placebo effect? Come on everybody. Get real! YOU ONLY GET OUT, WHAT YOU PUT IN! If you really want to do something positive about your Pd, then - DO SOME EXERCISE!

John

DRLH profile image
DRLH in reply toJohnPepper

My boyfriend was diagnoised 8 years ago and the signs of PD were way before that. He exercises every morning with his at home gym and stationary bike. He works as an auto technician and the exercise really seems to help. Sometimes you can't tell that he has PD. I think the side effects of the meds makes him look like there is something wrong sometimes.

JohnPepper profile image
JohnPepper in reply toDRLH

Hi DRLH. I'm pleased to hear about your boyfriend's endeavors. Tell him, "WELL DONE!" But also tell him that doing energetic exercise every day can and does cause more problems than not doing any exercise. You must give your muscles a full day rest before exercising them again. Walking on the road is better exercise than a treadmill, but a treadmill is much better exercise than nothing at all. The ideal exercise time is one hour, three times a week. If you are just starting to exercise then do ten minutes three times a week, to start with and increase it by five minutes every second week until you are doing an hour, That way you will be doing it safely, without injuries and you will start to enjoy it!

Good luck!

John

DRLH profile image
DRLH in reply toJohnPepper

Thanks for your advice. He does not use a treadmill. He has an all in one resistence type of machine that is like weights. He usually does his routine in the morning before he goes to work. He is actually getting some abs :)

JohnPepper profile image
JohnPepper in reply toDRLH

Hi DRLH. I repeat my warning that energetic exercise every day can be dangerous. It is also not as successful as exercise done every second day. When I was diagnosed in 1992 I had been going to the gym for one hour, six days a week. After diagnosis I increased the time to 90 minutes. Guess what? My performance got worse, not better. After 2 years of that regimen, I gave it up in disgust. I then joined a walking program and started walking every second day, beginning with only 20 minutes. At the beginning I was able to walk one mile in well over 16 minutes. Every second week I increased the time by 5 minutes. After 4 months, I had brought that time down to 14 minutes and twenty seconds. That was a huge improvement in four months.

But Hey, Pd patients aren't supposed to get better! How can that be?

John

satwar profile image
satwar

I agree that exercise makes you feel better but I'm not so sure it solves fundamental health problems.

For example exercise does not make a fat person thin, it just slows their metabolism. You lose weight by controlling what you put in your mouth.

The Parkinson's Society flashes around a graph showing PD progression versus Exercise intensity and says "we prefer to interpret this as the more exercise you do the less progression". Of course you could also say the more progression the less exercise you can do.

Don't get me wrong I go for a brisk 1 hour walk every day. I feel great and I get temporary symptom relief, but I don't believe it is solving the fundamental health problem to any significant degree.

gleeson profile image
gleeson in reply tosatwar

I'm pretty sure I benefit from two exercise routines, 1) The BIG exercises for Parkinson;s help with my problems of balance (For embarrassing videos my physical therapist took of me trying to do these exercises, see bit.ly/W2uTma.) 2} the Bridge and Belt-tigntening exercises my PT gave me for my lower back pain (see bit.ly/159Ci6b ) Thanks to #2 I no longer take pain pills. OK, I know these exercises work. Why do I keep finding excuses to not do them?

satwar profile image
satwar in reply togleeson

Absolutely symptoms are relieved and we feel much better and are able to cope with our problems.

Balance is a good experience for me also. I go through exercise classes where they force you to cope with unbalanced situations. I am way better in holding my balance now. But for me, I don't even get the dizzy sensation any longer, which would call into play my newly trained muscles. Exercise trained my muscles but I don't know how exercise stopped me from getting dizzy in the first place.

So one could say that my symptom of losing my balance has improved, but why ? Is it my newly trained muscles or that I no longer get dizzy spells ? I think it's the latter.

On the otherhand those newly trained muscles will prevent an accidental trip from turning into a fall.

cheerspark profile image
cheerspark

Dear John & Others,

Nice discussion on exercise. I do regular exercise with different intensity. It needs time to see how I can be benefited from exercise in the long run. However, I feel less rigid & more energetic immediately after exercise. The effect is more rapid & marked than my Requip. That's why I will move & jump around the house thinking I need to appear in my best shape before an event. I believe even a little exercise may boost my dopamine.

satwar profile image
satwar in reply tocheerspark

I used to think it was dopamine also, but it is actually ketones being over-produced by your liver that you are feeling. The keytones then energize the muscle and brain cells to do what they are designed to do. It's called post-exercise ketosis. Very thoroughly studied in the 1930's & 1940's but forgotten by many these days.

I posted a video by Peter Attia, who shows the effect on one of his graphs, unfortunately it's a very long video about living in a nutritional ketosis state.

I'm very interested in ketones because my tremor disappears during post-exercise ketosis. The only problem is that the effect only lasts for 1/2-1 hour for me. I really think low carb diet is the only way to get 24/7 coverage, with exogenous ketone supplementation as a backup in case you accidentally fall out of ketosis.or you need a boost in levels.

fwes profile image
fwes

Gleeson

you have a rightfully deserved reputation for fairness, and I will not suggest that you would intentionally be unfair. However in this case there are oversights which bias the results of your informal survey.

You compare a search for "curcumin, Parkinson's" with a search for "coconut oil, Parkinson's". Serious researchers whether scientific or not is generally reserved for products that are identified in a scientific way. We all know that coconut oil is not an end result, but rather is an effective ingredient for increasing ketones in the body. It would be relatively rare to find a scientific article relating turmeric and Parkinson's, the scientists would discuss curcumin and Parkinson's. Just so scientists do discuss ketones and Parkinson's, and the scientific literature has about as many references to this pairing as it has to curcumin and Parkinson's. I would suggest you repeat your search with ketones and Parkinson's.

Of course if you do a search for turmeric and Parkinson's or coconut oil and Parkinson's you find many commercial sites. We live in a capitalistic society, and that is their right. Indeed it is even their right to be excessively glowing in their description of potential benefits. Have you bought a car lately?

Another area where your words imply more than is probably intended is your quest for scientific proof. There are probably as many scientific studies for ketones and Parkinson's as there are scientific studies for curcumin and Parkinson's. But that is irrelevant, since none of these studies constitutes proof in any reasonable sense.

I happen to agree with you that there is broad evidence the curcumin may be beneficial and that it is unfortunate that there is not more attention to its potential benefits. If that is the point of your post I am wholly supportive. I now have five doctors who have observed me and certified the improvement in my condition since I have begun my regimen of coconut oil. I may be the only lucky person in the entire universe, but there are testimonials from others that they have experienced similar results.

As I've discussed in other posts, it was fully 10 years after the demonstration of DBS benefits before the results of any trials were published, and these were not scientific trials by most standards since they were not double-blind or even single blind. If you find that after 10 years of discussion of ketone therapy and potential benefits for Parkinson's patients, there are no published studies indicating some level of benefits than your post would be warranted. I suggest that it is still too early for your post in this regard. Perhaps you should change the wording to attack DBS, since it is widely used and advocated and has never had a double-blind trial.

gleeson profile image
gleeson in reply tofwes

Fwes - I owe you an apology for being so slow in responding and also for any implication in my earlier posts that my anger at the coconut oil hucksters also encompasses your efforts, I do admire Dr. Newport for her efforts to help her husband, for her research on coconut oil and ketones and for her role in promoting the scientific study that is know underway, But I get angry when Dr, Newport peddles a book that implies coconut oil and ketones are a cure for Alzheimers and appears with Pat Robertson on his show where we are told that "God must have a hand in this." The TV hucksters who peddle miracles are trying to make money by preying on the hopes and fears of the afflicted.

But none of that applies you. You have been very careful and cautious and honest in your approach, I have researched coconut oil and ketones and Parkinson's and agree there is research supporting your views, But I've seen research contesting these claims and I've read the cautions from organizations such as American Heart Association and the Alzheimer's Association about these claims. I'm looking forward to the results of the research study next year. Meanwhile I hope you continue to make progress and continue your research efforts. My guess is that coconut oil for you may be like 5-HTP has been for me -- something that helps us and a few others but is no panacea.

fwes profile image
fwes in reply togleeson

Gleeson,

No offense taken, I read your site frequently and admire the scope that you cover. You and I both managed to keep busy. Three quick points:

1. With regard to cardiovascular problems, please consider my new post "Coconut Oil, Lauric acid, and Cholesterol"

2. I also fear that I may be the lucky one and few others will have such benefits. However I'm starting to get enough positive responses to my non-clinical trial that I think there are some legs in this. Another fear is that it will last a few months or maybe a year or two and then the benefits will cease. Time will tell and if that is the message of my nonclinical trial, that is the message I shall make public.

3. I copy some of my words from my Post: What are the attributes of an effective treatment for PD?

"Common sense guides many of our life decisions. We educate our children not because of clinical trials but because we have observed that education usually leads to a more successful professional life. Sometimes we jumped to the wrong conclusions. Sometimes we are right and science scrambles to catch up. If there is evidence that say 5% of all PD patients would benefit from a nonconventional treatment, for which we do not understand the mechanism, should we deny them whatever community wisdom is available on the approach? I choose 5% in this question because that means 95% will likely not benefit, and yet according to the MRC 5% in the number of patients that will benefit from DBS. Note that if we had twenty 5% treatments, and that we could intelligently guide choices among these twenty, then the aggregate system would serve a large portion of the PWP. What I suggest is more of a systems engineering approach than a medical approach. Something I learned in my years at MIT Lincoln Laboratory. It is also an approach that is used for "insulin adjustment" for diabetics [IH.T.Banks, Mathematical modeling of the glucose homeostatis system in humans (with C.A.Carter), LCDS Lecture Notes 72-1, Brown University, July 1972]."

[By the way I have placed a clean copy of the radiology history story on that post and you are welcome to use it in any way that suits you .]

I continue to enjoy our exchanges. Thank you.

gleeson profile image
gleeson in reply tofwes

Hi Fwes -- I enjoy our exchanges and your level-headed approach to the questions about coconut oil. I've done some research on ketones and Parkinson's and found studies saying yes, there may be a connection but as usual some doubting this. But I've found even more researchers questioning whether coconut oil qualifies as a useful ketone provider for Parkinson's. I also was concerned when I read your post saying that since the c.o. you consume daily exceeds 1,000 calories, you are cutting back on calories elsewhere. I wonder how healthy it is to take 1,000 calories of c.o. that provides no vitamins and minerals and cut back on foods that do provide these healthy ingredients,

fwes profile image
fwes in reply togleeson

" I also was concerned ..., you are cutting back on calories elsewhere. ... how healthy it is to...cut back on foods that do provide these healthy ingredients,"

YOUR CONCERN IS CERTAINLY VALID, I would add protein to your list, since the absence of carbohydrates and protein, your body will go after lean muscle to create the repair material that is required to maintain essential organs. If one is considering a full ketogenic diet, then they should obtain good medical and nutritional advice. To begin with the book by Jeff Volek and Stephen Phinney,( the latter of whom has a PhD in Nutritional Biochemistry from MIT and an M.D. from Stanford.) "The Art and Science of Low Carbohydrate Living" presents a concise discussion of the science and practicalities of an extreme low carbohydrate diet. In addition one should consider personal attention and advice from a doctor or nutritionist. A middle ground is to cut out all carbs withhigh glycemic index. This would leave one with green leafy vegetables beans milkproducts etc. A nice feature of the MCT's is that they themselves cannot be stored as body fat. But if they are used for energy in lieu of carbohydrates, the carbohydrates can be stored as body fat. I have maintained the green vegetables, beans, etc. and added broad-spectrum nutritional supplements as well as adequate protein to protect my health. Again your concern is both valid and appreciated.

As I've stated in other posts, a balanced CO approach requires a lifestyle change. But PD is itself a lifestyle change and the consequences of long-term use of PD medications constitute a lifestyle change. You can either choose your change or you can wait for the change to choose you.

Hikoi profile image
Hikoi in reply togleeson

Gleeson

In your searching have you done any research on the vegan approach to health advocated by the Physicians Committee for Responsible Medicine. I think they may be the other end of the spectrum from low carb and ketogenic diets. How does one decide!

I see they have had a conference in June on brain health.

Reports here.

pcrm.org/health/diets/brain...

gleeson profile image
gleeson in reply toHikoi

Hi Hikoi -- After years of reading about and experimenting with vegan, high protein, low protein, high carbo, low carbo diets, I've decided all these fad diets are too complicated and confusing for me. The consensus in most of the research I've seen is that the best bet for the average person is sticking close to the Mediterranean diet. This suits me fine. I'm not a cook and I've got a terrific Lebanese restaurant and carryout in the neighborhood that I visit two or more times a week and stock up on carryouts for lunch, My breakfast is a high protein cereal laden with blueberries, raspberries, and blackberries. My supper is usually dal baht (rice, lentils and other vegetables with at times a little goat meat or chicken) courtesy of my live-in Nepali couple. It all fits my current effort to simplify my life as much as possible. My mantra is "less is more."

gleeson profile image
gleeson in reply togleeson

P.S. Hikoi -- I just checked out your blog. Very well written and enhanced with great music videos!

Hikoi profile image
Hikoi in reply togleeson

Not mine (I wish) but a friend's blog.

scottyt profile image
scottyt

How about a cocktail of Coconut oil and Marijuana oil spiced with cur cumin. lol

Coblrman profile image
Coblrman

I prefer curcumin and extra virgin olive oil. Its been claimed to boost curcumin in the blood 4+ times. EVOO is a powerful food but you have to search for the real stuff and use it wisely to preserve its value. I noticed a lot of pain disappeared recently and the only major change I made was in finishing a large bottle of olive oil and starting a new one (different brand and smaller bottle so I won't use it as long before opening a fresh bottle). For example left shoulder pain gone, left knee pain gone. In the gym I've progressed rapidly from leg press of about 300 lbs to now over 800 lbs. Posted this earlier on my facebook:

Nothing sacred these days. Even the anointing oil has been corrupted.

After a little research on the most and probably only beneficial cooking oil (extra virgin olive-oil) I find out the mob's been diluting the oil that comes from Europe. This is our food supply for crying out loud. We already know that the legal food suppliers have diluted this commodity for some time. Look at any dressing that states "Extra Virgin Olive Oil" in bold print on the front and then compare this to what's actually listed in fine print on the reverse side. You'll probably need your reading glasses. My guess is its best to buy from California producers with the COOC logo. Also buy in small quantities because it loses food value in about 1-2 months.

gleeson profile image
gleeson

I just learned that the respected ConsumerLab.com recently did a product review of turmeric/curcumin supplements. You can read a summary at bit.ly/1faAFeJ. As a subscriber I accessed the full report which had this to say in answer to the question "which product provided the best value?"

"Doctors Best Best Curcumin C3 Complex and NOW Curcumin were each approved products providing 500 mg of curcuminoids at the lowest cost (21 cents). If you are interested in enhanced bioavailability, the Doctors Best product included Bioperine which reportedly more than double the bioavailability. Products that include BCM 95 may have even greater bioavailability (about seven times that of normal curcumin. Consequently, although more expensive, Life Extension Super Bio Curcumin (63 cents per 500 mg) which contains BCM 95, may be a good value. Curcumin Extreme also contained BCM 95 but was higher in cost to obtain curcuminoids ($1.60 per 500 mg), although it does contain additional ingredients.

"In addition to providing good value, the Doctors Best, NOW, and Life Extension products also provide several hundred milligrams of curcuminoids per pill, which is in line with dosages typically taken . . . Some of the other products contain less than 100 mg of curcuminoids per pill. which would require taking many more pills to achieve the same dose of curcuminoids."

My prior research convinced me that BCM 95 pills were the best choice. I've been taking Life Extension's 400 mg pill once or twice a day.

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