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    • CommentAuthorShanteuse
    • CommentTimeMay 29th 2009 edited
     
    The last survey of MCT and Coconut Oil effects was in April. Here is a summary of the effects noted then:

    lmohr: 1 T. MCT oil per day. Better than last summer. Axxona caused problems. Also using fish and flaxseed oil.

    MarthaP: 3 or 4 T. of MCT Fuel in mornings. Cognitive improvement, when had to stop taking for flu, noticed difference.

    Divvi: notices improvement with 1 teaspoon coconut oil per day. "calls me by NAME again and seemingly more alert." also using bathroom again. Can't tolerate MCT, has to use coconut oil.

    Marsh: 2 T per day, hasn't noticed improvement.

    sprite: "her last MMSE IMPROVED since being on MCT AND coconut oils"

    swarfmaker: "since my mother has been on MCT oil... she seems to perk up a bit if she eats eggs.....wondering if there are materials in eggs that are needed by the neurons to effect repairs once they have the MCT derived ketone for energy."

    Dazed: he's "on Axxona now -- had been taking MCT oil for quite some time and it had helped but I'm thinking I see some more improvement with the Axona."

    Kathi37: "I wasn't sold at first, but now believe there is a difference..more than that, G thinks there is a change for the better."

    Charlotte: "He is diagnosed amnesic MCI and I definitely notice better recall when we remember to take it."

    pamsc: takes 1 T. each of MCT and coconut oil. "It has at least stabilized him.... hasn't helped as much with difficulty getting things done."


    Could those using it give us updates? I'd like to assemble more information -- positive or negative -- about the effect or non-effect this has had.

    So far: 10 responses, 7 positive, 2 neutral, 1 no improvement
  1.  
    As a follow-up, last week I stopped the MCT oil since it was giving her diarrhea and weight gain, with no obvious improvement. Since stopping I have not noticed any change. The people at her adult day care said the only change they noticed was that she did not go the bathroom as much. Axona caused severe abdominal pains.
    • CommentAuthorbriegull*
    • CommentTimeMay 30th 2009
     
    At about the same time that people started using coconut oil etc my husband started taking Trazadone at night. For some reason this has made him more alert. He's still totally confused about many things, but he stays awake during the day, remembers more (confusion and memory are not the same), and really has maintained that improvement the whole time. No coconut oil.
    • CommentAuthorStuntGirl
    • CommentTimeMay 30th 2009
     
    Where would I buy the kind of coconut oil you all are talking about ..... and the other stuff (MCT oil?)
    •  
      CommentAuthorpamsc*
    • CommentTimeMay 30th 2009
     
    My husband has been taking MCT and coconut oil for about 6 months now. He's in the early stages of Lewy Body Dementia and does have impaired glucose tolerance. Either he's better, even than he was a year ago, or perhaps it is that I have relaxed. Last week he went to New York city alone for several days and had a wonderful time, came home and was confused and having word finding difficulties. Was that fatigue or that he didn't take the oil for those days?
    • CommentAuthorShanteuse
    • CommentTimeMay 30th 2009
     
    StuntGirl, you can usually find the NOW brand MCT oil pretty easily at health food stores. I get it at a store that caters to body builders -- it's supposed to help with changing the way you metabolize fat, and supposedly helps burn fat instead of storing it in your body. It's in a large bottle -- 16 oz., I think, which will last a pretty long time -- and should cost between about 17 and 20 bucks. Start VERY slowly or it will cause various bad digestive effects. If you read through the long thread titled Coconut Oil with something like 600 posts, people discuss this at length. Start with no more than 1/2 TEAspoon, and work up from there to a couple of TABLEspoons a day. Also some people are using Twinlabs MCT Fuel. That's harder to find in stores, but you can easily find it on the internet.

    As far as coconut oil goes (I don't use it, just the MCT), probably get the organic stuff. People discussed various brands. You can find some that are pretty tasteless, or that have a strong coconut taste. There is also a recipe for a "fudge" using coconut oil and chocolate chips. Also, some people have had success making macaroons. The recipes are on the last couple of pages of that coconut oil thread, and I think there is also a recipe thread. Perhaps someone could re-post those recipes here for you if they have them handy.
  2.  
    Jen, we buy the MCT Fuel locally at a store called Vitamin Shop, and the MCT Oil at a health food store -- I gather that they're used by body builders. But for goodness sakes don't drag John out on another shopping expedition right away -- stuff like that can wait until things have settled down some -- I think your emphasis right now ought to be to just try for some calm, for both of your sakes. I know your mind must be racing ninety to nothing, but see if you can slow it down to about 5 mph until Monday at least.
    • CommentAuthorbille
    • CommentTimeMay 30th 2009
     
    I am using 2-3 tsps /day with no noticible results. Our family Dr answered my question about MCT Oil on internet, after some apparent research that she wanted me to go up to 7 tsps /day. That is kind of hard but I have boughtt some dropper bottles to carry in her purse when we go out to eat but sometimes just forget some meals. I hope that it does hope but my 13 years experience with my LO is that downhill is the only direction for AD.
    • CommentAuthorShanteuse
    • CommentTimeMay 31st 2009 edited
     
    I'm copying this post from Brianna, on another thread, about her use of MCT Fuel:

    "I've read quite a lot on the alz. forum and tried him on MCT Fuel. He has definitely improved. My hopes were to get him on Axona, but his neurologist has stopped that idea. She says since he has plaque built up in his arteries, he should not have the MCT. So, she wants him to try Neurostin for a month. I mentioned he had made improvements with the MCT, but she was not convinced it was worth the risk. He (and I was quite proud of him) said to her that his mental state was as important as his physical state! Side note here....a couple of weeks ago he would not have been able to gather all those thoughts together.
    Hoping someone will know more about this......BTW, I posted at ALZ. as "whitney.""

    http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1919&page=1#Item_0

    If you have tried coconut/MCT oil, or Axona, please post your experiences on this thread.
  3.  
    I think I see definite improvement with Axona and I don't have to try to figure out how much to give. Just one packet a day mixed with water. Doesn't taste all that great but DH is willing to drink it. Just learned from the Alz. site that icecream can be mixed with it. He has said his stomach hurts sometimes after drinking it but if he eats a pretty big breakfast with it, he doesn't have that problem. We have another check-up the middle of June. Although I've seen improvement in several ways, I'm not sure he could score any higher on the MMSE because he doesn't even try to count or spell backwards or try to remember the three words, etc. He just tells them he can't do that. Axona may not be a magic bullet but it does seem to help.
  4.  
    I still have almost a month supply of Axona unopened packets if anyone wants them. My address is in my profile.
    • CommentAuthorShanteuse
    • CommentTimeJun 2nd 2009 edited
     
    From Kathi 37, on the FTD medication thread:

    " A month ago G stopped taking Namenda on PCP's recommendation, and went on 50 mg of Seroquel. He is also taking MCT Fuel a couple of times a day. This past week it became obvious he has improved in nearly all areas. He eased off the Namenda, but I feel it should be all but out of his system by now. We talked about it last night, and he says he simply feels a lot better. We actually had a DISCUSSION ...unbelievable. Could just be the roller coaster thing, but it is amazing some of the things he is doing...actually working outside, reminding me when I forget to do something ( I love that one), back to daily doggie walks..all sorts of wee things that normal people would scoff at, but not me!
    Take what you can when you can! "

    http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1751&page=1#Item_0
  5.  
    Shanteuse

    My husband has FTD and he is on MCT/Coconut oil three times a day. When I started him on the oil I was only giving it to him in the morning 2 T and I saw am improvement. On the oil 3 times a day he is normal, works out three times an week, does all the yard work and housework. FYI his cholesterol has not gone up had it tested in December and again this month. I add 800 calories a day and he has not gained a pound. He has good eating habits, so that may be the reason for no weight gain. He is on Aricept.
    He is doing so well that it scares me because it is like waiting for the shoe to drop.
  6.  
    It's been almost 6 months since my husband started on the MCT oil (early December). Back around Christmas my son-in-law commented that the "vacant look" was gone--that was his condition at the time we started. Now we just spent a week in Texas at my sister's house. Her assessment was that, apart from several comments he made, he seemed perfectly normal. His interactions with people have become much more normal--appropriate comments and conversation, etc.

    His memory, while definitely better than it was, is still not good. We've been on this journey for 8 years and I would say that at this point we have probably regained at least two years.
    • CommentAuthorShanteuse
    • CommentTimeJun 3rd 2009
     
    On another thread, the question came up about MCT/Coconut oil helping hot flashes, which some people mentioned here. Let's start a second category here (to keep from having too many "survey" threads) --

    If you tried MCT or Coconut Oil YOURSELF and noticed a difference with hot flashes (or for that matter, anything else, like cognitive function), please post here.
    • CommentAuthordivvi*
    • CommentTimeJun 3rd 2009
     
    i noticed they diminished with the coconut oil. i tesp /day. i also noted that they increase with weight gain and sugar intake!
    i dont have the issue anymore i take sublinguals now for estrogen/progesterone levels. marvelous!
    if you take it and cut out sugar it may work better! divvi
    • CommentAuthorMawzy*
    • CommentTimeJun 3rd 2009
     
    I just finished the first large bottle of MCI. I put 1T in his cook cereal and also used it for sauteeing. I do not notice any difference except that he has put on weight.

    I asked our dr about it and he said he'd never heard of using it. But to go ahead and give it a try. I won't be using it again.

    Also, have used up two bottles of ginko baloba. Won't replace these either. See no difference at all.

    I will continue to use the fish oil gel caps 2x a day, multiple vitimans, calcium 600 mg 2x a day.

    I think that's about it except for his prescriptions.
  7.  
    I attended my first Alz. support group meeting today. I knew more about AD then anyone else, I think so I shared my and your experiences
    with coconut oil and MCT oil. There was a lot of interest and writing down names and where to buy locally so I suggested they have their
    spouse do the clock drawing now and after giving the oil and that was seconed by the facilitator so maybe next month some of them will
    have reports. One lady said someone told her to use coconut oil when she was pregnant and she wouldn't have any stretch marks and she didn't after 5 pregnancy's, so you might have younger ones to pass that info on to. There were about 15 attending with about 5 of them newbies like me. Enjoyed the interaction so I plan to
    try and attend monthly.
    • CommentAuthorShanteuse
    • CommentTimeJun 3rd 2009
     
    Thanks -- we may get some more data, and you may have been able to really help some people today. Glad you were able to get out and be with some people who understood how things are. Back on the original thread someone mentioned how coconut oil was really good for the skin (rubbing it on, I mean) -- hmm... maybe I'll do my own experiment on myself to see how it affects aging skin.... :-) :-( LOL
  8.  
    I sauteed some chicken tenders in coconut oil tonight. Really was good!

    Hadn't read that about rubbing it on your sking. May have to try that too!
  9.  
    Coconut oil is the only face cream I have used for at least five years. I recommend it highly.
    • CommentAuthorgcondap
    • CommentTimeJun 3rd 2009
     
    We started my husband Robert (Early Onset Alz.) on ~2 Tbl coconut oil/day late February. We noticed a difference in his speech and drawing-a-clock test in about 2 weeks.

    When we started he was to the point that he would not initiate conversation, It was very difficult for him to ask a question when he needed something, so we had to guess what he was trying to say. His answers to our questions (if he even understood) where 1 or 2 word replies, sometimes the wrong word or not able to come up with word at all.

    After about 2 weeks, he spoke in short phrases. After another 2 weeks or so, he was speaking in short sentences. He now initiates conversation asking me how my day went, what news item we might be discussing, etc. He's still not anything like he was before, and he still has problems in other areas (memory, reading, processes, etc.), but THIS IS GREAT as far as we are concerned. Any improvement is a blessing!\.

    He started getting diarrhea a couple of weeks ago, so we are going to try MCT oil. We figure that it has a higher concentration of caprylic acid per tablespoon, so we won't have to give him as much oil. I've email his doctor about Axona; no response yet.
    • CommentAuthorgcondap
    • CommentTimeJun 3rd 2009
     
    lmohr - The Alz support group members may not know as much in certain areas as you, but it can be quite therapeutic just being around people who know what you are going through. I've attended our local group almost 2 years now and miss it when I can't attend.
  10.  
    Steve has been taking coconut oil for over a year now and for about 10 months a mixture of coconut oil and MCT oil, just over 2 tablespoons three times a day. His MMSE and clock drawing improved immediately, his personality returned, he did not seem so “dazed and confused.” He says it was like a light switch came on. I have heard from a few that had a similar experience, but most seem to improve more gradually. He had a very significant hand tremor with eating and a jaw tremor when he would try to talk. He became more social, and responses more appropriate with conversation. His libido also returned shortly after he started the oil. Over the past ten months he had an improvement in his ADAS-COG scores of 9 points out of 75 and on the Activities of Daily Living a 14 point improvement out of 78 points. In spite of how much saturated fat he consumes (most of it is actually medium chain triglycerides and omega 3 fish oil), his cholesterol profile has steadily improved and has been within the normal range since at least August 2008 – on 5/14/09 his total cholesterol was 175 / HDL 68 (>40 nl) / LDL 93 (<130 nl) triglycerides 72 (<150 nl). Initially he gained weight when we added the fat to his diet, however, after cutting out some of the other fats and reducing his carbohydrate intake, he has lost most of the weight gain. Some of the other things we have seen gradually improve:
    • His gait has become normal.
    • He was unable to run for more than a year and can run again.
    • He had a visual disturbance that prevented him from reading for about 1 1/2 years. He describes it as the words moving around erratically on the page. This has not happened for more than 6 months. He also feels that his reading comprehension has improved very recently. He recently relayed to me details of two articles he read from Scientific American a couple of hours later.
    • He has a mild tremor that only appears if he is late getting his oil.
    • He no longer feels depressed and believes that he has a future. He says he feels like he “got his life back."
    • He is much less distractible and able to stay with a specific task, such as yard work or vacuuming.
    • Family members, who talk to or see Steve every couple of months, report that his conversational skills have improved each time they have contact with him.
    • His shoes used to get separated and he would very often wear only one shoe or sock. We used to have piles of the same sided shoes and no match by the doors and in his closet! He would remove one shoe in his garage and they would accumulate there. He is no longer having this problem.
    • Within the past 2-3 months his memory for recent events is improving. He often brings up events that happened days to weeks earlier and relays telephone conversations with accurate detail.
    • He used to spend many hours rearranging his garage, but recently became “bored” and wanted to do something more. He now volunteers twice a week at the hospital where I work, helping in the warehouse with boxes and stickers, and working with someone to deliver supplies around the hospital. He is very pleased with his new job and enjoys the people he is working with.
    • He had a habit of whistling the same 8 notes over and over (Johnny Cash “Because you’re mine, I walk the line” – made me bonkers!!) This has disappeared. He still whistles when he is happy but has a larger repertoire of songs now like he used to.
    • He also used to have episodes for several years where he would break out in a sweat and have to lay down, sometimes several times a day – this has not happened for several months.

    He is not "normal" by any stretch, but he is heading in the right direction, and, as several of you have also said, we will be more than happy to take any improvement!
  11.  
    Continued:

    I think consistency and patience are key in seeing improvement for those who are going to improve. It is like fuel. If the tank is empty the car isn’t going to run. If certain brain cells are unable to use glucose, they may be able to benefit from the alternative fuel (ketones). If the fuel isn’t available, the neuron won’t function normally. The brain is capable of making new neurons and therefore potentially doing some repair or making new connections.

    For those who don't know about this, Dr. Richard Veech of the NIH in Rockville, Maryland is able to make a ketone ester in his lab, and has been studying the effect of ketones in mice and beginning to understand how this may happen. A paper is in progress about this. He has started human toxicity testing for his ketone, which will be able to produce much higher, controlled levels of ketones than coconut oil, MCT oil or Axona. He produces about 9-10 pounds of the ketone in his lab each week, but still lack the funding for a plant to produce it by the ton - if there is anyone out there who knows of a charitable source or other way to raise $15 million for production of Dr. Veech's ketone ester so that he can begin studies for Alzheimer's please contact me at preemiedoctor@aol.com! This is urgent for all of us and goes beyond Alzheimer's disease.
    • CommentAuthorShanteuse
    • CommentTimeJun 5th 2009
     
    ttt for deb
    • CommentAuthorCharlotte
    • CommentTimeJun 5th 2009
     
    I was in getting an adjustment today. My chiropractor is big on fish oil as a preventive. We were talking about fish oil and CoQ10 and I told him about coconut/MCT oil. He said he will have to research it - sounded interesting to him.
    • CommentAuthorShanteuse
    • CommentTimeJun 11th 2009
     
    Copying Swarfmaker's post from another thread:

    I don't remember which thread I read it on, but someone mentioned that he noticed a reduction in the myoclonus after starting the MCT/coconut oil. Or it could have been cinnamon. Or both. I don't remember now. We use both. We noticed a reduction in my mother's myoclonus, but it is still there. We see it mostly when she is falling asleep or just before waking up. Now, most of the time while she is awake, it is gone.

    I also think she has losened her hands a bit.

    I found the thread I was thinking of...
    http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=2100&Focus=43165#Comment_43165
    • CommentAuthornatsmom*
    • CommentTimeJun 11th 2009
     
    DH has been on Axona for 2 months now & I don't notice any significant change at all. Still losing weight, altho eats ALOT. Peaches are now in season here in Texas, so I'm making Peach Crisp often & adding icecream...it does wonders for his mood & adds a bit of weight if he eats it often enough :) I'd like to try to coconut oil...what type & where should I get it?? Thank you!! BTW, the peach crisp does wonders for my mood too, but my waistline is hanging onto it BIGTIME! LOL!!
    • CommentAuthorShanteuse
    • CommentTimeJun 11th 2009 edited
     
    There is a very long thread about coconut and MCT oil (over 600 posts) -- it is well worth the time slogging through it.

    http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1297&page=1

    recipes:

    http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1362&page=1#Item_0
    • CommentAuthorAdmin
    • CommentTimeJun 11th 2009
     
    natsmom,

    You can log onto the the home page of this website - www.thealzheimerspouse.com - and look on the right side of the page - scroll down until you come to the Coconut Oil and MCT oil links. You can purchase them at Amazon through those links.

    There is another thread here titled "coconut oil", but it got so long that Shanteuse started this "Part two" thread. The first one is http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1297&page=12#Item_2

    joang
  12.  
    Shanteuse, A good place to start might be Dr. Mary Newport's web-site, http://www.coconutketones.com/

    Read her first and second articles and then check out her blog. The June 11th entry is about Omega-3 oils--she mentions her conversation with Joan and references this web-site. The older blogs give more detail on the protocol she is following.

    Lori
    • CommentAuthorCharlotte
    • CommentTimeJun 11th 2009
     
    You can find it in the cooking oil section at Walmart - cheaper than in the Supplement section but the same thing.

    I was wondering how it would taste using coconut oil instead of butter/margarine in the crisp topping. May buy some apples and try it. Peaches are too expensive up here still.
    • CommentAuthorkelrote
    • CommentTimeJun 14th 2009
     
    PLEASE NOTE: Below is a COPY of what I posted in the original discussion
    thread, so that readers would be directed to this PART 2 continuation
    ==================================

    This topic/discussion continues in a PART 2 at this link below:
    http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=2570&page=1#Item_0

    I hadn't realized this until now... and wondered why no one had posted on this discussion for so long - until I discovered
    the continuation, listed as: MCT and Coconut Oil update, Part 2

    My Dad and I started my Mom on the MCT & Coconut oils about 3 months ago (gradually increased her to
    Dr. Newport's percentage combo of the two) giving just over 1 TBSP, twice a day, but have not seen any
    noticible improvement. If anything, a bigger decline... which seems to be a yearly pattern the last 3 years,
    she drops off in late April into May. Maybe just a coincidence but wondering if a yearly weather or allergy
    type of connection. We are in Central Florida and the heat and humidity start to pick up then. Anyone else
    notice this type of effect?

    Thank you
    Kelly
  13.  
    When someone doesn't respond, I often wonder if there is another disease process, not AD, going on. The diagnosis of AD in someone still alive is a "best guess" based on MRI's and ruling out other causes of dementia and memory loss, as well as seeing progression of the disease. A particular type of PET scan should show decreased brain metabolism in specific areas, which indicates that there is decreased glucose uptake. This might be worth checking out. Since you are in South Florida, you might consider taking her to the Johnny Byrd Alzheimer's Institute in Tampa if you haven't already, or the Gerontology Center at University of South Florida so that they can do a complete evaluation.

    If you have already done all of that and are relatively sure that it is AD, then I would suggest trying to increase how much you are giving her a little at a time, if she can handle it, to as much as 2 tablespoons three times a day at meals. If she has an upset stomach or diarrhea, cut back a little.

    Also, if you are not already doing this, consider adding omega-3 fatty acids (fish oil) to her diet.
  14.  
    According to the information on Axona, it did not work as well in people with APOE4 gene. Maybe this is the reason some AD patients don't seem to respond. My wife showed no improvement from coconut oil or MCT oil. She did not tolerate Axona - got pain in her abdomen each time, so I quit after 3 doses.
    The other possibility is that it works better in patients in the earlier stages. My wife is in mid stage 6.
  15.  
    marsh, me husband did show improvement with the coconut oil and MCT, actually I think more with the coconut oil but he is nevertheless
    declining. However he can still do several things and I think the oil is helping with him. My daughter has the theory that since he is in
    severe change may be why he is not responding as well as mary newhart's husband. I think that might be true.
  16.  
    I would say that my experience would be more like that of Dr. Newport. Last December my husband’s short-term memory was totally gone. He could remember nothing. In the activities of daily living he was still capable of doing most everything with prompting to shower, brush his teeth and things like that. He had a vacant stare. He was GONE mentally. He panicked if he could not see me.

    Three weeks ago we spent a week in Texas with my sister. Her comment was that in a casual conversation, you would not know that he had any problem. A friend just remarked to my son yesterday about the improvements he noticed in my husband. My son carries copies of Dr. Newport’s article in his car and gives them to friends and relatives who notice the change. He has given away about a half dozen bottles of MCT oil for them to try. Do you think he has seen a difference in his father?

    And I think the improvements continue—we shall see.
  17.  
    That is just great Lori. I am so happy for you.
    • CommentAuthordivvi*
    • CommentTimeJun 16th 2009
     
    Lori that is indeed great news!
  18.  
    Steve is APOE4 and responded very well to the medium chain fatty acids. I also read before trying this that Ketasyn (now Axona) did not work as well for people with APOE4, and therefore expected that MCT oil would not do much for him. I decided to try it anyway as coconut oil for Steve and the rest is history of the happiest kind. Axona has only one of the medium chain triglycerides (C:8) but coconut oil has C:6, C:8, C:10, C:12 (all medium chain triglycerides) and five other fatty acids, including some monounsaturated and polyunsaturated fatty acids, including the essential fatty acid omega-6 (but no omega-3, which is necessary and should be supplemented.) It also happens to have some phytosterol, which is one of the substances that lowers cholesterol and is the basic component in some of the cholesterol lowering agents! It is very possible that each of the fatty acids in coconut oil plays an important and different role in the metabolism of our brains and other organs. Another possibility is that the Axona folks did not have a huge number of people in their trials and I often wonder if the APOE4 problem was a fluke in their study. Also, some people in their studies had "mild cognitive impairment," not yet diagnosed with A.D. Dr. Richard Veech of the NIH, an expert in ketones who makes a ketone ester, says that he can think of no biochemical reason why Axona wouldn't work for someone with APOE4.
  19.  
    Lori, I am so pleased to hear about how your husband is doing. I am also delighted that your son is passing out copies of the article. Any help with getting this message out is very much appreciated. You never know who may come across it and then may experience a life changing event for the better. That is why I spend so much time at this and also carry them in our car. Hearing about a response like your husband's really makes my day and makes me feel like the effort is worthwhile. We make the circuit of the local health food and Asian stores every couple of weeks and they make the copies available to their customers. This is how I started getting the message out when I couldn't get people in the media and the Alz Assoc to investigate this and tell people. I tried to get their attention very intensely for the first six weeks after Steve had his dramatic response and still do, but decided after their lack of response that I at the very least, I had to go with the grass roots method to tell as many as possible. I could not live with myself, knowing how many could be helped, if I did not try to share this with other people. I suspect that the high profile people I have written to either haven't gotten or grasped the message, or just believe it is too easy to be real and toss it aside. The very long list includes Oprah (many times), Dr. Oz, Michael J. Fox (this may help with Parkinson's as well,) Maria Shriver (who we talked with personally in Washington DC and handed her a copy of my article and several related research papers,) Sandra Day O'Connor, Ellen Degeneres, Jenny McCarthy, David Hyde Pierce, Elizabeth Hasselbach from The View, several different people from the Today Show, many politicians, including Hillary Clinton and Obama,) all of the major nightly news channels, CNN, USA Today and many other newspapers, the producers of the HBO Alzheimer's Project (in person in D.C.)

    Also, to Lori, and anyone else out there who has seen an improvement, it would be very helpful to share your story with Dr. Veech to get the funding he needs to study his ketone in Alzheimer's disease. You can either email me details at preemiedoctor@aol.com or directly to Dr. Richard Veech at rveech@mail.nih.gov. His email address and other contact information can also be found under the heading of "ketones" in Wikipedia, for anyone who wants to verify his expertise. There are also copies of several of his articles on ketones available to print out on my website www.coconutketones.com.
  20.  
    I do want to mention that the regional newspaper, the St. Petersburg Times, did write up a story about what happened with Steve, and getting the message out grew by leaps and bounds thereafter, so I am very grateful to the editors and the author, Eve Hosley-Moore, for publishing the story last October 29, 2008. It was also then picked up by many groups who have published the information in their newsletters.
  21.  
    A St. Petersburg Times reporter contact me a few days ago, who is doing a story about Axona (the prescription MCT oil) and came across the MCT/CO discussions on the internet. He wants to do a story about the coconut oil and MCT oil along with the story about Axona and wants to talk with some other folks who have had some results with CO or MCT oil. If anyone is interested in speaking with him, his name is Steve Nohlgren and his email address is Nohlgren@sptimes.com. He told me it is okay to put his contact information in this post.
    •  
      CommentAuthorJeanetteB
    • CommentTimeJul 17th 2009
     
    Has anyone tried the coconut cream concentrate? That was all I could get at our local grocery so I picked it up and used a little yesterday in a fresh cherry smoothie. Very good. There is very little information on that package, except for "Made in England." It is in the shape of a bar, like very hard margarine, good coconut taste.

    Today I did get the coconut oil and used about a teaspoon to fry omelets for both of us. Very good. I have also ordered the MCT oil, which seemed quite expensive. I'll start them both very gradually.
    •  
      CommentAuthorJeanetteB
    • CommentTimeJul 17th 2009
     
    I should add that I was excited and amazed to find this thread a couple days ago. I have been enjoying reading some old threads occasionally; it is like going back into a bit of history to see what came before, but had not been curious about coconut oil until somebody brought this to the top recently. The results that some have been getting sound really wonderful.
    • CommentAuthorShanteuse
    • CommentTimeJul 17th 2009
     
    MCT oil should not be expensive. Can you order some on the Internet? The Now brand is quite inexpensive for the huge amount you get -- is that available in Europe?
    • CommentAuthorswarfmaker
    • CommentTimeJul 29th 2009 edited
     
    Contribution withdrawn
    • CommentAuthorswarfmaker
    • CommentTimeJul 29th 2009 edited
     
    Contribution withdrawn
  22.  
    Part I - Dr. Veech has been working on the potential use of ketones to treat various diseases since the early 1990's, and developed the ketone ester that is now undergoing toxicity testing in healthy people. Here are the differences between what he and Dr. Henderson are doing:

    - Dr. Veech has developed a pure ketone ester of which a dosage can be given to achieve a specific level and can be given several times a day, as needed, to maintain these levels. He is aiming for levels that occur during starvation - 5-7 mmol/liter, since these may be the optimal levels to produce improvement without serious adverse effects (in diabetic ketoacidosis, the levels are closer to 25 mmol/liter.) The advantange is that one does not have to starve, can eat a normal diet, and can still have these kinds of levels.

    - The ketogenic diet has been used to treat resistant childhood epilepsy since about 1920, and when one is on such a diet that is about 80-90% calories from fat and 10-20% carbohydrate+protein, ketone body levels reach about 1-3 mmol/liter, perhaps a little more. It is difficult but not impossible to stay on such a diet. This is very similar to what the Inuit Eskimos eat.

    - According to the Accera patent application, Dr. Henderson claims to have had the "insight" to recognize that mild ketosis produced by consuming medium chain triglyceride oil (MCT oil) could bring about improvement in certain neurodegenerative diseases such as AD, that have a defect in glucose transport into cells, since ketone bodies can serve as an alternative fuel to brain and other cells. Dr. Veech mentions the potential for "mild ketosis" to bring about improvement in some of his early papers on the subject, and his own patent application, that predate the Accera patent application. Also, Dr. Henderson did not discover that ketones are an alternative fuel, but rather this was reported by Dr. George Cahill and his group in the late 1960's; Dr. Veech and Dr. Cahill have been long time associates and have written papers together on the subject of ketones. In addition, the biochemical fact that medium chain triglycerides are partially converted to ketone bodies by the liver has been known for many decades. MCT oil has been used in infant formulas and adult nutrition products for decades, has had GRAS (Generally Regarded as Safe)status from the FDA for decades, and has been available over the counter all along.

    - Dr. Veech is not in a race with Dr. Henderson - his ketone ester, which he has developed at the NIH, will provide much higher levels of ketones (10-15 times Axona levels). This product could also be made into an intravenous fluid that could, for example, be given to persons with traumatic brain injury immediately, to reduce the amount of brain damage; could be given to people during surgery - some people develop memory problems after they have a major surgery. I am excited to think that this could be given to extremely premature and sick newborns and improve their outcomes as well. One of Dr. Veech's goals is to make this product as inexpensive as possible so that everyone who needs it will be able to afford it. His biggest problem is that he needs a much larger plant than his lab at the NIH to be able to make it in large enough quantity to study thousands of people with AD. NIH politics and competition with many other projects appear to be the problem with getting funding for production. It may take someone or some group of a philanthropic nature to make this happen.

    - Dr. Henderson's company Accera, maker of Axona, is using a product that has been in existence for 30+ years, a medium chain triglyceride oil (MCT oil)that he gets from another company (Stepan) and puts it into a powder form that allows it to mix into liquids. With the once a day dosing recommended by the company, which is 40 grams total, but 20 grams MCT oil, the levels achieved in his study were about 0.5 mmol/liter. The only active ingredient in it that has been studied for AD is the MCT oil.