Thanks again for this research you do. Truly remarkable!!!!
I would like to request the article by Dr Maalouf. I plan on being prepared to speak with my wife's PCP and Neuro when AXONA becomes available. I'd like to have this info in my hands for them to review as they are very skeptical. How strong is that Feb. 09 date for the release of the product? Anybody know?
thanks again -guy
PS I tried accessing the Henderson article that I had download to go over it again, and the file said it was expired. I then tried to download a new one from accera's site and got the same message. I did print out a copy for my wife's Neuro and I wanted to drop a copy off at our PCP. Is there a new paper coming out??
The Henderson article in question is the one at this url: http://www.accerapharma.com/news-index.html.
I just downloaded it again, and it says "This document has been expired. Please contact your Elsevier Sales Representative for additional information." I had no idea I had one of those Elsevier Reps!
The ozone has cleared and I am in receipt of Mallouf. Many, many thanks!
Lots of authors used to put links to .pdf files of their papers on their web sites. Some of the journals got really huffy about it, because they wanted to be able to charge big bucks for each copy through their own web sites. (Which is really dumb when you think about it, because they always give paper reprints to the author to send to anyone who requested them ... .pdf makes it easier and less expensive for everyone.)
With the advent of search engines, the cranky journals have been able to locate sites that offer their papers for free. So often, now, when you go onto Google Scholar and try to download, you'll get a notice that a site isn't active any more. Elsevier is one of the worst.
I've sent you a .pdf file. Hopefully. I think I got the wrong paper the first time I tried. He had a couple come out in 2008.
Thanks, Sunshyne, for the references. After spending all day yesterday hunting for information, I’m taking today off to clean house.
At a Super Bowl party on Sunday, my son had an interesting conversation with a friend. This friend told my son that he had spent a few minutes talking to my husband and was surprised at how alert he was. This was someone (a medical professional) who had met with my husband several times a month in a working board situation for a number of years and had observed his decline over those years. It’s nice to get some objective confirmation from someone who is not involved in what we are doing.
Lori2, my DH's chiropractor made the same comment to me. He said he seems more alert and seems to feel better. He didn't know about the coconut/MCT oil. Which is your DH on?
Sunshyne, my MCT oil says it is 100% saturated fat. I had not read the label until someone else mentioned it and I didn't fully understand your explanation about the labels. Is mine safe?
Yes, Dazed, as long as your MCT oil contains just caprylic and capric, it's safe. I would recommend that you buy a brand that provides you with the MCT profile that it contains. Some manufacturers produce products that are more pure than others.
Sci-Fit had the best profile I found, "Premium MCT Gold" from Ultimate Nutrition is nearly as good and not as expensive.
From a chemical structure standpoint, the short-, medium-, and long-chain triglycerides all are "saturated" in that they do not have carbon-carbon double bonds.
The only fats that are actually *required* to be included in the FDA nutrition label as "saturated fats" are lauric, myristic, palmitic and stearic. I gather that not all companies which sell MCT oil have bothered to read the instructions, so they're including caprylic and capric when they don't have to.
Sunshyne, Do you know whether they used hydrogenated vs. non-hydrogenated coconut oil in those studies, since that could also make a difference? Hydrogenated and partially hydrogenated polyunsaturated oils, as you know, can pick up oxygen free radicals and some persons, such as Mary Enig believe that the hydrogenated and partially hydrogenated vegetable oils may have more to do with cardiovascular disease than saturated fats. Also, if the studies looked at coconut oil only and the subjects were not taking any omega-3 fatty acid, there would be a potentially high ratio of omega-6 to omega-3, which would promote inflammation. A 4:1 or even better a 2:1 ratio of omega-6 to 0mega-3 is the current recommendation, which is why I advise people taking coconut oil to also take omega-3 fatty acids. Even olive oil is more than 14% saturated fats in the C16 range and above; soybean oil is almost 16% and the fish oil that most of us are taking has 20% saturated fats from C14 to 18. Recent news is that half of the people who have heart attacks have normal cholesterol levels, and that high BP, by damaging the walls of blood vessels, and associated inflammation, correlate with greater risk of heart attack. Cholesterol is necessary to support the brain cell structure and to produce certain vital homones. There is evidence that elderly people may require more cholesterol than younger people to maintain a healthy brain structure and also a very recent paper showing that people with AD who are APOE4 have abnormally low levels of cholesterol in the brain. You could email me at ketones08.com and I would be happy to email the article to you. I missed much earlier discussions and I don't know whether you tried coconut oil or MCT oil and what the results were.
WOW! What a lot of information. My brain feels soggy. I have been giving DH 1 gelcap of fish oil a day, 1 tablet of Kinkgold, and 1 tablespoon of MCT oil. I also use it in cooking. He's been using these supplements for a couple of weeks now and I do not notice any improvement. In fact, I think he may be even a bit more confused. If I do see an improvement or any changes I'll let you know.
I certainly do appreciate all of the research you folks are doing and I enjoy reading the other posts on this subject as well. Thanks a lot!
Mary, I ignored any study that used hydrogenated coconut oil. The only one I noticed that used hydrogenated oil was done with hamsters, anyway, and I focused on controlled human studies for the most part. As I read some of the more recent studies and reviews, I found I had to go back and rethink my analyses of earlier papers ... this is one field in which the advances have been breathtaking.
Hydrogenation can do some strange things to fats ... produce trans fats, for one thing, and apparently a number of cross-linked species that are not "natural" and whose impact on human health is unknown but probably not good. From what I've seen on that subject (very recent), I'd avoid anything with hydrogenated oils as much as possible.
You are ever so right that we need to consume balanced diets. The more I tried to stick just to the impact of a given fat, the more I learned that fats don't tell the whole story. Trace constituents such as phytosterols can affect the impact of a given oil even if everything else is held constant, for example. Fiber (of the right kind) can help prevent uptake of cholesterol in the gut. And so on and so forth...
It was really quite annoying. I was looking for a simple answer, and ended up working on changing my husband's entire diet. (Also mine!)
Those references I just posted for Lori2 are very good at explaining all this.
I'd be very interested in that paper ... will email you. Thanks.
I started off with coconut oil, since I swallowed everything the coconut oil proponents were saying. They said there were studies supporting their claims, didn't see any reason not to believe them, until our own Sandy D questioned me about the saturated fat content. Sigh. I spent SO much time looking into it, you have no idea, and ended up finally having to admit she was right.
So I've switched to a combination of MCT Fuel (emulsified product, artificial orange flavor) and MCT oil. (Like you, I thought it might be better to dose him throughout the day, and I didn't want to give him orange juice with every meal ... afraid he'd start to rebel.) I don't put much faith in caregiver evaluations -- we tend to be just a tiny bit biased, you know? ... but ... I think his communications are much easier these days, and he's showing more initiative doing chores, and doing a better job of remembering appointments. He had an extended neuropsych exam a few weeks ago, and I was floored by how well he did. Right now, I'm seeing some minor new problems, too, but we've also been stressed out by some goings-on, and his symptoms are very sensitive to stress. Plus it may just be age, he's almost 78 now. Your husband is younger than that, isn't he?
Tonight I tested my husband on the clock drawing for the first time since starting on the MCT oil. I think I have been reluctant to do it because I was afraid that he wouldn’t do as well as I hoped he would. When he drew it for a test at the rehab center last September, he drew a circle, started numbering with 1 at the appropriate spot, and then continued numbering around until he ran out of space with number 15 at the top.
This time, he drew the circle, first put 12 at the top, 6 at the bottom, then the 3 and 9, and filled in the remaining numbers at the appropriate spots. I hadn’t expected that much improvement. To say that I am a happy camper is an understatement.
Lori you should contact DR mary newport with that info. she was asking for input with clock drawing lately...thats quite remarkable i am so happy hes much improved. i also have seen many subtle hints like colors and counting. divvi
divvi, I hope Dr. Newport is still reading and posting here.
One question I asked Sunshyne some time ago is - does the coconut oil/MCT oil just make them function better temporarily or does it actually help to slow down or stop the disease. She said the information she had was that it was disease modifying.
Dr. Newport or Sunshyne do you have any more information about this? Also is more better or is there a maximum dose?
DH didn't complain yesterday when I left him with a caregiver for my 4 hour respite. First time in months he didn't complain. Today he has did so good this week, I left him at home alone 2 1/2 hours to go with daughter to a friends wedding shower. He is a friend of the bride to be so was quite happy I was going as long as daughter was along. Also, today I asked him if he would take out the trash and he did so. I don't know if the coconut oil/MCT had anything to do with it or not but I am happily continuing with 1 T. a day.
Dazed, I haven't seen anything about how Accera came up with the dosing regimen they used in their trial. But from everything I've seen about their work, I'm sure there was some sort of logical rationale behind it...
Who was it who reported several months ago that her husband, when asked to draw a clock, drew a circle and then wrote the time in as numbers, as if it were a digital clock? I thought that was quite clever, a perfectly valid response to the request and far less trouble than drawing a clock with hands...
Sorry, it has been a few days (long hours at the hospital). Lori, if you wouldn't mind, please contact me by email when you have a chance at ketone08@aol.com and, if you are so inclined, I will tell you how you can get copies to me. Dr. Richard Veech begs me every time I talk with him to ask people to draw the clocks and get them to us. In any case, I am very pleased to hear about your husband and the other spouses who have seen some improvement. I spend most of my "free" time trying to get the message out, so you have made my day.
Regarding the long term, it is an unknown. It has been eight + months for Steve and he seems to be hanging on to the improvements. He has hydrocephalus (larger than normal areas of fluid) related to atrophy (shrinkage), so a complete reversal is extremely unlikely, but I do still see him improving in the area of conversation and recall of recent events and conversations. I hand write in a journal and I was bemoaning how far behind I was the other day and he reminded me that I had bought a gizmo to dictate into a couple of weeks earlier and that I should use it. Last May he couldn't remember things that happened earlier the same day.
Since ketones provide fuel to the cells that cannot use glucose, as long as they keep getting foods that provide this consistently, I believe that our spouses have a chance at hanging on to the neurons they have left much longer than if they do not have ketones available. Do I have proof? No. Hopefully Accera is planning to do long term studies to find this out.
Regarding the MCT dosage from Accera, Dr. Veech and I have actually discussed this. He does not know exactly why they picked this dosage, but he does know that 20 grams of MCT (Accera's dose) will result in the production of about 150 mg of beta-hydroxybutyrate, one of the ketones, and that this would supply about 25% of the fuel for the average brain. They may have also looked at what the average dose someone would tolerate after adjusting, without diarrhea, the most common side effect. They had one trial to test formulations with healthy people and some were started at 20 gm and the others at 10 grams. Over 20 grams, more people will have diarrhea. The mechanism isn't known, as far as I can determine from trying to research this.
Is anyone going to the Public Forums sponsored by the Alzheimer's Association, March 23-25, 2009? Steve and I are going to attend for the first time. The registration is free for people with AD accompanied by a caregiver. Today is the last day for early bird registration ($175). They have three full days of meetings and meal events and the third day is a full day meeting with members of Congress and/or their health representatives from your area. Their website is alz.org.
Dr. Veech, Dr. George Cahill (another ketone research whose wife has AD) and I are meeting with a member of the House in two weeks to discuss the ketone research funding for Dr. Veech. There is also an excellent new documentary on PBS stations called "Alzheimer's Disease: Facing the Facts." I believe they are hoping to increase public awareness to stimulate funding for research.
Starling, I think we are about the same place. You said language problems. My dh has more and more language problems like forgetting what he was going to say - in midstream. Doesn't like to socialize or want me to go without him. Mine does his own shower every evening, without fail without my reminding him. Sometimes he will take his pj, shorts, t- shirt and socks to the bathroom with him. If he doesn't parades to the bedroom naked to get them. He can still tie his shoes and zip his jacket.
He knows EVERYBODY including all family, friends and customers we had in the business years ago. (I don't understand this because I thought with AD they didn't know family members even). He has problem keeping track of the date and day of the week, but knows he wants to go to Church on Sunday. He always has the TV on but seldom gets involved in a show. He can sometimes direct my driving directions to get someplace familiar. In the small picture NOT the whole picture. He is ever alert while driving (if he isn't dozing) watching that I don't get too close the edge of the road or his a pot hole. He is improved from starting the MCT and coconut oil 4 months ago. He knows the President and past Presidents and the seasons. I am going to have him do the clock drawing now. Clock drawing and signature shows small improvement over the one done a few days after starting the coconut oil. I am only doing 1 T. of oil a day.
i orderd MCT oil saturday too. i will dose 1 teap at first and keep the 1 tesp at breakfast with the cocooil. my DH is quite a bit perkier as well, no real big changes but when you live 24/7 with them even the slightest changes are noticed. mine can pick out some colors and counts alot more now. and overall seems more alert. gets up to go to bathroom most of the time even at nite. he understands what you tell/ask him but hearing is so bad i think thats been alot of his issues. even though he can understand he cant reply in whole meaningful sentences. he does laugh at jokes on TV though, so very wierd its all so jumbled..! divvi
Changes are so gradual sometimes that we don't notice until we suddenly realize that hey, we don't have that problem anymore. Several months ago, my DH would always forget where I was when I was gone...like shopping or a meeting, etc. Someone would call and he would tell them I wasn't there but he didn't remember where I was. I started writing down where I was going and approx. what time I would be back.
Now, after about two months of coconut/MCT oil, I just realized today that I don't have to do that now. He remembers where I am and is getting better about knowing what day it is.
hallejulah! woke at 5am and realized DH wasnt in bed, yipes! found him smiling! and sitting on his 'throne' asleep. and he pooped by himself!!. it was a very proud moment:) i think we will be taking coconut oil to the end! or axona..to good to be true..hahaDivvi
SS-anytime,anyplace, anyone of you are viable to de-throne me: (yes pun intended!)i am cautiously optimistic but a realistic..haha..he did just 'tell' me by motioning across his stomach, (the cue) that he was about to explode.:)
he had a SECOND proud moment in a 24hr frame-..hey I will take any moments i dont have to be on poop duty..wow, i am in shock...but very wary..Divvi
divvi, how long have you been giving the coconut oil and what stage is you DH in? In the information about Axona, it stated it was for mild to moderate AD but also that it had not been tested for severe AD. It may help in all stages.
We would love to see you have to give up your status of Poop Queen but pity the person who takes your place.
Its the big question where DH is stagewise. he can understand what you say to him but cant answer without jibberish. he does better with yes or no's. that being said, today on the TV watching the CMA memorial service, he was crying and seemed visibly upset with the music and eulogy..shocked me but lets me k now he IS STILL capable of emotions and understands it all. i said its 'sad' and he agreed and wiped the tears off. he can be incontinent some days and then today went by himself. last 2 days no accidents and he has been 'reading ' his bar magazine and tabloids. not sure how much is comphrehends but can read some and seems interested in them-so strange. he can eat and dress himself buttons and zippers etc if i give him clothes. and puts on his shoes. i think hes in mid-late stage 6 but holding so far. he can write his name some days yesterday he got only his first name..some days its quite amazing. been on the tub of coconut oil 2-3teasp is almost gone. so maybe 3mos? there are most definately minor improvements and i will keep giving to him regardless as i see it in his ADL and demeanor. will discuss axona with neuro at next appt. they also said mild=mod with aricept and namenda and they still give to latter stages too i believe. i dont know but i like the results so far so i am good with it and will continue. Divvi
Been outta the south too long to know what the CMA memorial service was so I googled it.
My husband reacts very strongly to any emotion on TV. He laughs along with laugh tracks! And if he sees someone emotional unexpectedly, he gets like Jim Brady - or stroke victims - get, sortof inappropriately almost about to cry. Yet he can't stand watching the real-life soap stories on the morning shows.
He also startles - anyone else have that? Startles like a tiny baby.
Oh, and he's been doing really well lately - but no coconut oil.
oh sorry Briegull, it means caylee anthony the little girl found dead and tot mom in jail..on all the news today..my eyes hurt i boohooed more than DH. funeral music does that-plus thinking some day it will be me sigh. divvi
Help Sunshyne!!!!!!! I went on line to buy MCT oil for my DW and the price range for a quart bottle is between about $13.00 to $75.00. What constitutes the BIG price difference and whcih brands (Imohr and Marsh) are you using? DickS
My son bought Sci-Fit's MCT Oil for me at a local health food store he patronizes for something less than $20 for a 32 oz bottle. I did see the $79 price quoted on Joan's site for purchase from AmericaRx, but it never specified the quantily -- just that the shipping weight would be 6 pounds. However, further down the page I saw 33.8 oz of Premiium MCT Gold for $20, which is the brand I believe Sunshyne buys.
I'm using "NOW - Sports". I got 32 ounces for, I think, around $19. I'm still not sure it is doing anything, but it's easy to use (I put 1 Tablespoon in some applesauce, and grind her pills into the applesauce, twice a day)
i just started DH on MCT oil today. not sure the brand. figured any kind to give it a start.:) marsh i found out i dont have to crush any of DH meds in applesauce!! it just dissolves all of them and some are hard coated like prilosec! it must be acidity of the apples. try it and see, just let it 'sit' for an hr or so and see if yours melt as well-then mix with a spoon! its so easy like that!no crushing! he takes every bit like this now every day! divvi
Mine is Ultimate Nutrition MCT Gold and I bought it over the Internet and can't remember how much it was. Isn' that new Axona med food coming out in March supposed to replace the MCT Oil and coconut oil? I'm still a little confused about that.
Dick, some of the difference in price is due to the quality, and some ... gadzooks, who knows.
I steer clear of any brand that does not provide an analysis, because they're less likely to have high percentages of the caprylic acid.
The Sci-Fit has the best content (but not all that much better than the Premium MCT Gold from Ultimate Nutrition) and is a little pricier.
Mostly I buy the MCT Gold, and I've been getting both that and the MCT Fuel from All Star Health, $15 and $6.80 respectively (plus $5.95 shipping charge per shipment.) All Star has an amazing review profile on amazon.com, everyone says they're great. Two shipments of Gold and one of Fuel so far, very pleased with their service.
I use Now Sports MTC Oil. NOW is a brand of supplements that is carried by both my health food and grocery store so I feel comfortable with the brand. One tablespoon has 7.8 g. of Caprilic Acid (8-chain) and 6.2 g. of Capric Acid (10-chain). The price on-line ranges all the way from $12 to $20 dollars. On Amazon it ranges from $14.95 to $19.95.
Has anyone else had problems getting mct oil? My order of 2/12 was damaged in shipment--don't know when I will get it. I tried to order two other places and they were both out of stock.
Met my cousin and her husband today and they both commented on how much better dh was looking and acting since they seen him last. (prior MCT and coconut oil) She said he made a couple joking remarks to her and seemed more alert. They were shocked.
i wasn`t sure what this post was about finally read it, i ordered my MCT OIL AND COCCONUT OIL this morning can`t wait for it to come in so I can start him on it, how long before I will see a change in him if it is going to work?