I'm not Sunshyne but here goes. The "doctor" has posted no credentials. Coconut oil is a saturated fat which is not good. Could be a new addition to the old snake oil.
I would be scared of the coconut oil because of the saturated fat. My husband does not have high cholesterol but I do and have tried to avoid coconut oil for years. We are using flax and fish oil.
Working on this. The medium chain triglycerides in coconut oil appear to be healthy, lmohr. No problem finding the patents, and there have been a couple of small clinical trials, one that just wrapped up. Lots of science behind the concept -- the patents are very well-written (and oooooooooooh so long). They focus on 8-carbon triglycerides, while coconut oil is 50% a 12-carbon triglyceride, not clear if the shorter chain is preferable for some reason.
Must take husband for a walk, then dinner etc. Will do more sleuthing tomorrow. Quite interesting.
Note: you can get diarrhea if you don't ramp up slowly to the full dose.
I just got the article from my step-daughter. I was going to come on here and ask if any of you had heard of it and I'll be darned if you all had posted about it already. I'll be interested in what you find out about it.
You need to wait and then the article will come up. Basically she is Dr. Newport and her husband is the patient. She had read about coconut oil, went to a health food store and bought non-hydroginated, virgin coconut oil (basically the highest grade she could come up with) and tried it on him and his MMSE scores went up. There is a photo of his clock faces before, during and after which since I know what the clock faces tend to look like are very interesting.
She is involved, along with a Dr. VanItallie in a study about using this in the same ways a lot of us have been told to go on fish oil.
I'm sure Sunshyne will be along with a bunch of additional articles. This one was from the St. Petersburg Times.
Oh my goodness....are we going to have to choose between mental health and physical health with the saturated fat? (sigh) Thanks, Starling. I will try the website again and be more patient for it to come up. Joan's site also takes more time to pull up than some of the others.
No, no, no. This stuff is entirely different, apparently quite good for you. Be patient, Dazed, I'm working on it. Lots and lots of stuff to wade through, VERY hot topic right now (not coconut oil itself, but the MCTs in it, how they're metabolized, whether/how they might work, and studies on AD, Parkinson's, epilepsy, etc.) The lady in question was trying to find clinical trials for her husband, tripped across a patent that mentioned coconut oil as a source of MCTs, and started digging. It's my understanding she bought the virgin oil because the way it's processed isn't as likely to break the MCTs down, something else I need to check into. She is NOT associated with the company that holds the patents (the ones she referred to -- there are a gazillion patents in the area) and they probably wouldn't be happy with her for touting coconut oil instead. She's been communicating with scientists at NIH who are active in the MCT / ketone body / ketogenic diet area.
Well i read her story and googled her name and i dont care, i am off to buy the 100% extra virgen cold pressed coconut oil! and i will try onmyself first in small doses..i lived in mexico 20yrs on the coast and coconut and cononut milk is highly consumed and we ate it all the time. i am not afraid to try! divvi
Joan, i just emailed you this article and telephone number and email address of DR Mary Newport -she is also in florida. maybe you can contact her directly and get info!!!! i am sure the rest of us would be interested -better yet make her a member?? :) divvi
Oh yes, Joan. Invite her to be a member of our group. I'm really tempted to run out and buy the coconut oil. Like Divvi said, what do we have to lose? Divvi, please let us know if it makes any difference for you and DH.
oh yes, i will get it in the morning. start with 2 tablesppoons for each of us.. now remember if you try it CAN most definately give the runs if you take more than your digestive tract can handle so taking a little at a time and work up to it...its organic 100 percent no trans fat..i feel safe trying it for a week to see. should be interesting..make take it slower with DH to adjust...of course i will document from day one too just for records..divvi
Talk with a doctor before stuffing it down your spouse's throat, wouldja please? What I've seen so far looks very interesting, it makes sense, people eat coconut meat, oil, and whatever all the time, but still...
The way it's processed makes a difference as to what happens to the MCTs, so for now, I'd stick with Newport's recommendation of the extra-virgin.
I've been looking more into the company with the patents. I'm assuming there's a particular MCT that for some reason is more likely to help than the others (a C8:0) that they've been developing. Or maybe they just wanted something they could synthesize, rather than having to buy and process coconuts -- I gather the processing part is tricky.
They have a "prescription medicinal food" that's gotten FDA approval (!!!) and is about to launch ... and if the press releases are to be believed, it looks really good.
It went through clinical trials as "Ketasyn" but has been renamed "Axona" since a survey of MDs concluded that the original name was too similar to other drugs on the market such as Ketamine. (This per the Executive Director, Research and scientific founder of the company, with whom I am now on a first-name basis.) I found artwork for the launch elsewhere on the web, am trying to get my new good buddy to tell me more. I have just confessed that I'll probably tell the world whatever he tells me, don't know if that will improve communications or make him head for cover. <grin>
Accera web site http://www.accerapharma.com/
The info on the clinical trials for "Ketasyn" is mostly in the press releases.
NOTE: it appears that this approach works much better for patients who do NOT have the APOE-4 mutation. Patients with the allele hold steady, those without it improve. Also, I've seen hints that it may be better to take Omega-3's along with the MCT / coconut oil. Need to dig more into that. Presumably, Axona has other supplements in it that improve its efficacy.
Well this is very interesting. Sunshyne thanks for all that info!!!
Found this article and it seems that when this article was written (Jan. 08) they were planning on putting Ketasyn on the market in November. Not sure if that is still true, but maybe soon...
Food for Thought A Colorado company takes a novel approach to treating Alzheimer's disease - and to getting its therapy to market. http://www.tjols.com/article-509.html
About this being a "saturated fat", it is a lot like the whole fish oil thing which was originally also considered to be a bad fat, just because it was a fat. But neither of them really are saturated in the way a meat product would be. And because it is not hydroginated, there are no trans fats.
There is also the controversy about whether eating saturated fats actually has anything to do with high cholesterol. There is a lot of stuff on the web that you need to take with a whole pound of salt, a pinch won't do. But for most of our LOs, if their cholesterol numbers went through the roof, it just plan wouldn't matter.
My "new buddy" lost his mother to AD, and decided to do something about it. He spent years researching what is known about the disease, and developed a new hypothesis which appears to have a very solid scientific background. He founded Accera and managed to get some venture capital funding (something REALLY tough to do when you're bucking the trends and proposing an entirely new approach for treating a disease).
And they've accomplished a remarkable amount of work, including randomized, double-blind, placebo-controlled Phase IIa, IIb, and III trials, with the relatively tiny amount of funding they've received. (There are lots of reasons for investigational new drugs to fail on the way to market, and one of the biggest is not getting enough funding to make it through the entire process.)
He sent me three papers (one of which you can download at the Accera site home page) on the hypothesis behind the new med. I'm going to read those, do some more sleuthing about related meds (especially what this guy at NIH has been doing), and then summarize what I've found.
But so far ... I am dumbfounded that this company and its new med haven't gotten a lot more publicity. This is a first-in-kind compound -- a brand-new type of drug going after a totally new biological target -- and Axona (Ketasyn) has already received FDA approval. Yet the announcement of the approval was completely lost in the hoo-hah about Rember and the bad news about Flurizan last August. (See Conde Nast Portfolio, August 13, 2008:
All he said about launching Axona was that they've completed another trial, and he's working on the manuscript to publish those results right now. They plan to launch Axona "early next year" and it will be "available nationwide with a doctor's prescription."
We've got our hopes up so many times and had them dashed since starting on this journey but this news really excites me. All other treatments seem to be too far down the road for most of us. Early next year or maybe sooner....Wow!
OK, my husband and I read the article, went to The Healthy Grocer, Inc and bought a book called Coconut Oil by Cynthia and Laura Holzapfel. It is not mentioned that it is good for Alzheimer's but does mention it being good for many other things, it has a chemistry 101 on fats. After reading the book we bought the coconut oil and will add it to our daily diet starting with 1T. per day. It has many other benefits and aids in digestive and other health problems.
I think that before we all start our own "clinical trial", let's heed Sunshyne and consult with our doctors and get some guidance. I remember not being sure of what over the counter cough medicine to buy for my wife after she started on the meds. I'm glad I asked!
there are comments from readers all the way at the bottom. There was one I just saw from Dr. Mary Newport which I found interesting:
From Dr. Mary: Any non-hydrogenated coconut oil would have the ketone effect, contains no cholesterol. Steve's total cholesterol has remained < 200, HDL and LDL are better than ever. It's reputation as "oil clogging fat" is a myth from the 1950's.
I had been thoroughly irritated with Dr Newport for not giving credit where credit is due -- the Tampa Bay article almost acts as if she personally invented the therapy. However, I found another, much lengthier article, actually written by the good doctor herself, in which she talks about Accera and says coconut oil is just something to use until Ketasyn (now Axona) is available. (So I owe her a mental apology.)
I've read the papers Dr Henderson (scientific founder of Accera and etc) sent me ... mindblowing. Most are quite long, and highly technical, but very well-written. They explain his hypothesis in great detail, and how it fits with everything else that is known about AD. (See below.)
I've also tracked down a number of his other patents. They have been looking at additives that can make the MCT oil therapy even more effective. Don't know which / how many of these will be in Axona, although I have my suspicions from the ones that were emphasized. They also indicate that there are ways to make it more effective for the APOE4 carriers ... I sent another email to ask if they've done much work on this. (He's going to be SICK of hearing from me.)
And one has details from a clinical trial that hasn't been published in the scientific literature yet. They compared Axona (Ketasyn) vs placebo in patients who were taking conventional AD meds. There was significant improvement in cognitive function above and beyond any impact the conventional meds might have had. So (a) Axona will help patients who are already on conventional meds, and (b) it does not interfere with the efficacy of the conventional meds.
Back to the papers ... the most recent is available on the Accera home page: Henderson ST. 2008. Ketone bodies as a therapeutic for Alzheimer's disease. Neurotherapeutics 5(3):470-80. (I couldn't open it on a Mac, so he sent it to me in .pdf form. I'd be happy to send it to whoever wants it.)
Another one that he sent me is not readily available from the web, but again, I'd be happy to send it to anyone who wants it. In it, he explains his hypothesis of why APOE4 is a risk factor, and why it's common in some regions of the world but not others, and how it fits into the development of AD and the stages of AD according to his hypothesis, plus various alternatives for treating AD. Henderson ST. 2004. High carbohydrate diets and Alzheimer's disease. Medical Hypotheses 62: 689-700
The third was their first publication on their clinical trials. That information is pretty much available in Accera's press releases.
Then he's got another, which I haven't found yet or read, but it provides additional evidence on why his new drug is showing signs of neuroprotection: Studzinski CM, MacKay WA, Beckett TL, Henderson ST, Murphy MP, Sullivan PG, Burnham WM. 2008. Induction of ketosis may improve mitochondrial function and decrease steady-state amyloid-beta precursor protein (APP) levels in the aged dog. Brain Res 1226:209-17. Region specific declines in the cerebral glucose metabolism are an early and progressive feature of Alzheimer's disease (AD). Such declines occur pre-symptomatically and offer a potential point of intervention in developing AD therapeutics. Medium chain triglycerides (MCTs), which are rapidly converted to ketone bodies, were tested for their ability to provide an alternate energy source to neurons suffering from compromised glucose metabolism. The present study determined the short-term effects of ketosis in aged dogs, a natural model of amyloidosis. The animals were administered a 2 g/kg/day dose of MCTs for 2 months. Mitochondrial function and oxidative damage assays were then conducted on the frontal and parietal lobes. Amyloid-beta (Abeta), amyloid precursor protein (APP) processing and beta-site APP cleaving enzyme (BACE1) assays were conducted on the frontal, parietal and occipital lobes. Aged dogs receiving MCTs, as compared to age-matched controls, showed dramatically improved mitochondrial function, as evidenced by increased active respiration rates. This effect was most prominent in the parietal lobe. The improved mitochondrial function may have been due to a decrease in oxidative damage, which was limited to the mitochondrial fraction. Steady-state APP levels were also decreased in the parietal lobe after short-term MCT administration. Finally, there was a trend towards a decrease in total Abeta levels in the parietal lobe. BACE1 levels remained unchanged. Combined, these findings suggest that short-term MCT administration improves energy metabolism and decreases APP levels in the aged dog brain.
Wow thanks for all of that work in doing this research!!!
I got the Henderson paper and I'm starting to read it. There's a lot to digest. I will be speaking to my wife's primary doctor and her neuro this week so if you could point me or send more info that you've mentioned here I'd appreciate it. guy
i got extra virgen non hydodrogenation, no trans fatty acids, medium chain tryglycerides-certified organic- coconut oil an hr ago. i took mine already a big teaspoon in yougurt. i gave DH his spoonful in a banana milkshake icecream by spoonful.:) he loved it. the name is jarrow's coconut oil, 16oz 12.00//at sun harvest foods, a whole foods place in tx.unrefined and cold pressed from the flesh of coconut palm fruit.no solvents. compare-
coconut oil 1 tbsp-14g
total faat 14g/sat fat 13g/polysat fat .5g/monounsat fat.5g//ZERO colesterol/Zero sodium carbs and proteins are zero..
crisco pure canola oil colestrerol free which i already use! 1tbsp-14g
and it tastes much better than the crisco:) its not an oil per say as it gels in cooler temps so its like solid shortening or butter.
will look for ANY changes and let you know...wish us luck! we are the guineas -hahaha...xxxx and praying this can lead to something good in the future. divvi
If you want recipes for drinks and dishes made with coconut oil or coconut cream concentrate (which sounds good enough to eat by the spoonful all by itself):
This web site (Tropical Traditions) talks about the different ways coconut oil (and coconut cream concentrate) is made. One way, the virgin oil retains the scent and taste of coconuts, and another way, the oil is fairly tasteless.
sunshyne, thanks i knew youd see my post and offer the scientific 'scoop' on coconut oil:) it smells and tastes like coconut. i lived on the coast in mex for 2/3 my life and the sustained diet there for the people were fish/fruit/coconut. they have very little real disease and most are thin and in good shape. my 2nd husband even had coconut orchards to supply the hotels for their coconut Drinks!! haha..by the way, excellent business... so eating anything assoc with coconut is something i have no qualms about. divvi yes i read that Dr was neonatal. i hope she joins the group if joan can get hold of her..divvi
Well its been over an hr and i cant say the coconut oil has made an impact..hahaha...DH is using his toothbrush WITH toothpaste to brush the 4ft horse statues mouth.:)) ay, yayh, yayh!!! (*?*) well anyway i will continue with the one dose for a week and see -i can always fry chicken in this stuff, its great..hah!
So maybe his vision has improved to the point he noticed the statue was dirty? And after all, he IS using a toothbrush to brush teeth!!!
It does take time, divvi. I get the impression that it's better to give two or three smaller doses throughout the day, so the concentration of the ketone bodies in the blood stays fairly level ... although I think the clinical trials just used a single dose per day. Anyway, you have to build up to the full dose, and then it's my understanding that the cognitive function continues to improve over time.
It also depends on whether the ADLO has the APOE4 allele, and whether s/he has one or two of them. If that's the case, it slows down the progression but may not actually improve function.
Another comment has been posted by Dr. Newport in response to another commenter:
You can go to the original web page http://www.tampabay.com/news/aging/article879333.ece
and the scroll down to the comments:
I have added the two comments in question here:
by Mary Nov 3, 2008 8:09 PM From Dr. Newport RE: Ann's comment: The name of the product was not mentioned in the Times and this is not my recommendation. When Dr. Veech's ketones are tested & approved I will fully support a change from coconut oil/MCT at that point.
by Ann Nov 3, 2008 12:32 PM Dr Newport recommends taking coconut oil until Ketasyn becomes available. Ketasyn has gone through double-blind, placebo-controlled clinical trials, HAS RECEIVED FDA APPROVAL, and will be launched sometime early in 2008, under its new name, "Axona."
Interesting ... from the article written by Dr Newport herself:
"Until Ketasyn is available, and until Dr. Veech’s beta-hydroxybutyrate is tested and available for use, this simple dietary change could make a difference for people who believe they are at risk and for those who already have one of these diseases."
I would have thought that indicated she put Ketasyn and Dr Veech's ketones on the same level of recommendation.
I don't either. Dr Henderson comes up with this amazing hypothesis, spends years researching it, produces the studies that Dr Newport uses to help her husband ... and she DOESN'T want to give him credit? Weird.
Without Henderson, her husband would still be heading into the toilet.
Not to mention, Dr Veech himself pointed out that Newport doesn't have anything to show for coconut oil itself being helpful other than her husband's response, and (delicately) mentions the need to have clinical trials to confirm that a treatment is broadly applicable.
I mean, the lady is saying that people should wait for Veech to get support for synthesizing "his" compound AND support for clinical trials AND go through the trials AND find someone to develop the infrastructure to manufacture and market "his" drug -- wait all those years, rather than use a med that has already gone through all that, has already been proven to work, and is almost ready to launch. And Veech may NEVER get "his" drug commercialized. It isn't clear that he's even trying to. He has been in an ideal position to get funding for "his" drug, and he hasn't managed to, yet.
One suspects that some sort of negative interaction happened between Newport and Accera between the time Newport wrote her article and the time she was interviewed for the Tampa Bay article.
Ok today is the 3rd teaspoon i have given of coconut oil to DH. i am not trying to see any changes but i thought i'd say it anyway. i AM seeing something new today. he called me 'baby' -hasnt done this in i cant remember, he was watching the news and said 'the bald guy' when i asked something.. hasnt said the word bald or given any idea he knew what it meant anymore,, and just now i said you need to drink your water (usually i have to get up and hand the glass to him everytime and he usually acts like he didnt understand the command. now he just said 'ok, and picked up the glass and drank it down by himself right after i said it=. plus he spilled some and took the rag off the coffee table and wiped itup..Never did this -.i know, i know, just coincidence, but something is up he just seems more alert than usual...everytime i say something to him he just seems to understand me the first time...wierd....will update again soon. divvi
divvi Are you taking it too? I gave my husband a teaspoon at noon. Going to try it a few days. I can't see that it will hurt. Do you just hand feed it or mix it in something or fry with it? I didn't taste it but it didn't seem to have any odor. I spread it on his grilled cheese sandwich.
yes i am taking too cause i want to know if its going to be issues with diarrhea upfront:) so far so good. i melted the teaspoon for each of us in the microwave and added to yougurt today and icecream yesterday. i want to be sure he gets the full teaspoon x2day to start. i am not having any delusions that this may work but i swear i am seeing him different today and 'alert'..thats all i can say. me too, i say it cant hurt to try for a time, Imohr...nothing to lose. divvi
ok guys, stunned...i just went by the bathroom looking for DH and saw him on the commode pooping -i walked in and he said 'smells pretty bad'...???????????? everyone here KNOWS i double duty poop patroll...am i delusional yet????? haha.. god help us...maybe something is working...divvi
I just decided to do the clock drawing with husband. He had his first teasp. 5 hours ago. He actually drew a large circle and conected it together. First time he has did that since before the MM tests. He put a couple numbers inside the edge of the circle close together. Now I know the cocanut oil couldn't be working that fast so I am wondering if the flax oil is helping. He has been taking one of them a day the past 2 weeks.
This is weird. Going to give him his second cocanut oil shortly with dinner. I am not taking it myself without asking my Doctor because I am on Lipitor and I worry about the saturated fat. Husband is not and has very low blood pressure. I showed him the computer picture of the Dr. husband and clock drawings and me giving him the cocanut oil and he labored over his drawing about 5 minutes. When he did a drawing a month ago he just drew squiggles and signed his name the same way. Couldn't tell the two apart. Just thought, I am going to have him sign his name on the same paper. I dated the paper and going to put it in a file.
divvi. Whey don't you try the clock or something similar like the Dr. did for her husband?
I saw the original article and must admit I just tossed it aside as another scam. But now after reading all your input hmmmm, guess I will be heading to the health food store tomorrow. After I call my doctor of course :) Thanks for all the research guys!