Part 2 - One advantage of Axona over MCT oil purchased over the counter (OTC), is that by emulsifying the product, the levels of ketones could be slightly higher, since more of the MCT oil could be absorbed. However, MCT oil and coconut oil can be emulsified by adding egg yolk or a small amount of liquid soy lethicin, which can also be purchased OTC - I found it at a local health food store and add 1/4 teaspoon to 8 ounces of MCT/coconut oil when I want to mix it into something.
-We found from measuring the ketone levels on Steve and another person using the same C:8 MCT oil used by Accera, that the levels peak at about 1 1/2 hours and are virtually gone by three hours. Our peak levels were similar to the patients in the Accera study (0.4-0.5 mmol/liter.) The levels on coconut oil were about 0.3 mmol/liter at the max, but peaked at three hours. This is why we decided to mix MCT and coconut oil and give this to Steve three times a day, to maximize how much ketone he would be circulating and try to have it availabe to his brain as much as possible.
- Until Dr. Veech's ketone ester is available, I see Axona and MCT oil and/or coconut oil as temporary, much inferior, but still potentially beneficial ways to provide "mild ketosis," which may help many people have some improvement in symptoms or at least some stabilization until the real deal, Dr. Veech's ketone ester, comes along.
- A story about ketones will be running hopefully this Sunday, August 2, 2009 (or the following if a big news story kicks it off) - When it is available, you can read it and see an accompanying video at "www.sptimes.com".
For those who are interested, there is an article about ketones, Axona and what we have been doing with Steve in the St. Petersburg Times today, along with videos on their website and on our local news channel. www.sptimes.com and www.baynews9.com.
Dear Swarfmaker, sorry I went a bit overboard on the response in that case. It is easier to explain some things on this website than on the alz.org website, if you catch my drift.
Mary, how is Steve doing? I would also be interested in hearing from others who are on Axona or coconut oil/MCT: do you still think it helps? I started the coconut oil and MCT about a month ago but have trouble giving the whole dose, since I have to use it in cooking (DH won't take "medicine" unless he can think it's for diabetes). I don't really see much change. Every time something good happens (he mowed most of the lawn yesterday, and has been quite pleasant most of the time) I think "Maybe it's the coconut oil!." dx is AD, I think stage 4, no idea whether he has the gene that might make a difference. I'm going to try to find out whether Axona is available in the Netherlands.
Jeanette, there are lots of other ways to get coconut oil in him. There is a recipe for "fudge." (you can use the search function here on the site to find it) Also, MCT oil is so utterly tasteless you can get away with mixing it in foods. Or make your own vinaigrette dressing and use MCT for part of the oil. Just don't overdo it or you will have graphic evidence of the effects of increasing intake too rapidly.
Yes, thank you, Shanteuse. When we eat at home it is indeed not too hard to get the stuff "in him." Problem is that we are often out for breakfast and/or lunch and/or supper. Well, never all three! Yes, I have started making the fudge and he likes it, and this is good because I don't eat it, so it's a way of feeding it to him without feeding it to me too. Next problem is, how to keep him from eating the whole ice cube tray in one go, which he did the other day. (No ill effects, by the way, he seems to be used to it already). Today I put some of the cubes into separate baggies and hid them in the freezer, leaving enough for today out. We'll see how that works. He likes to eat it frozen.
I keep a couple of 1 1/2 oz travel bottles that I found at the drug store (the specific bottles I have used to hold mouthwash) with the coconut oil/MCT oil mixture in little zip lock bags in my purse. That way we have it with us when we eat out. We usually put the oil on Steve's soup or salad or with his coffee at the end of the meal. The small bottles also pass through airport security without a problem.
Difference is that Steve is cooperating with taking the stuff and Siem is NOT. No way I could sneak it onto his IKEA breakfast (etc.) without his noticing and loudly objecting. He thinks the fudge is simply candy that I make for him because it's good for his diabetes !!!
I just found this thread last night. I am so inthused by what you all have to say. I checked some sites,last night, for reseach purposes. It all sounds good. I am going to get this coconut oil . I need to know what the problem, getting the person to take it, is. Does it have a bad flavor? My husband always wants to please and takes anything I give him. Should I expect resistence here? I would love to see a flicker of improvement. I don't think we have anything to lose. By the way, where the heck is part 1? I feel like I should see the beginning of this thread . Thank you for all the wonderful information and hope you provide.
No, Callie the coconut oil is delicious, and you can use it almost anyway you would use any other kind of oil or shortening. (only not for french-frying). I've brought the original thread (LONG but worthwhile) to the top for you. Your husband will love the coconut oil. (Mine is stubborn.)
Yes, the oil (I usually use a combination of MCT and coconut) works fine for most kinds of frying and sauteeing. But what really absorbs a lot is bread: as in grilled cheese sandwiches, made in the frying pan. Very good indeed.
I should add that I'm not really sure the oils have had much effect on my DH's condition, and I would like to hear from others who have been using it. Do you (still) think it's helping?
Been using the coconut oil about 3 months. I see no difference. But he still puts it on his cereal every morning - I don't even have to remind him. May not buy more when this runs out. Guess I need to make more coconut macaroons - he loves them.
Swarfmaker, that is amazing, why should anyone be trying to surpress this information? I'm curious: is that group worth belonging to, in addition to this one? I hadn't heard of it before.
I've been using the oils for about five weeks and see no clear difference, except that DH is not going to bed so early (and I'm not sure I'm even happy about that). But I'm going ahead, we love the coconut oil and I like being able to use more oil in cooking without gaining weight. I bought the first coconut oil at a health food shop but later found that it is available everywhere in the toko's (little shops featuring Asian foods, catering mostly to the immigrant population; there are hundreds of them in Rotterdam). The ones I've been in all seem to have the same stuff, a pretty generic brand, labelled only "Pure Coconut Oil" certainly not the Extra Virgen which I haven't found anywhere here, but very reasonable. I love these shops and never had a real reason to explore them before. I ordered the first MCT oil from my pharmacy (Nutricia) but have now found it much more reasonable online.
It's INFORMATION. The website guidelines clearly state that this site does not endorse or recommend any treatment, but it dispenses information. As Swarmaker says, "if you have information, you can make a decision. If you don't, someone else has made it for you."
There are quite a few AD groups on yahoo groups. I joined a couple but found most are there were for the friendship, not information per say. I am only guessing, but I would guess that they felt you were there to push an agenda instead of for support and friendship. Please stop judging or condemning them - there are many groups to fulfill the needs of many different kinds of people. What is good and meets the needs for one does not for someone else. I am sure there are many that come here for a while and decide this forum is not for them. I have gone to the AD association websites forum and they are not for me. It is too hard to follow and does not meet my needs. But, there are many that it does and that is the way it should be.
swarfmaker - I usually just glance thru your post because many of them involve testing for this or that and that cost money. Money I don't have and I know the doctor will not order the test. They are interesting and gives food for thought, but to me, your post seem like you are pushing your viewpoint on me and if I don't agree, I am being condemned/judged. Your enthusiasm is pushy and overwhelms me. - That is how I feel.
If I remember correctly you are not dealing with an AD spouse, but a parent. I dealt with a mother, aunt, cousin who had 'senile dementia' and now a FIL and SIL who have AD plus my spouse. A spouse is emotionally much different. Even Dr. Newport's post about coconut oil does not make me feel pressured like your postings do. Again, this is how I feel. If you post the same way on the yahoo groups 'groups', this is only a guess, but they could feel that way too.
My "viewpoint" is that life is sacred, and we are obligated to do what we are able to do to preserve it, until God takes away our options. How can this offend you so? But until now, I have never stated that on this message board. I have to wonder where you got that from. Pressured? Pressured to do what? To you, I am merely words on a computer screen. I have no substance. I have no power to exert my will. You have to choose to read what I write. You have to choose to be offended. Any pressure or offense you feel is of your own creation. If you don't like what I write, don't read my posts!
I spend a great number of hours each week digging up information about these neurodegenerative diseases. I read new ideas and new developments almost every day. When I find something that might be helpful, I pass it along free of charge. It is no loss to me to if I don't share it here. I often have information that would be useful to someone looking for help. From this day on, when the pleas for help go unanswered on this message board, the guilt is not on my head.
If you would like to discuss any of this further, you can post your comment on these Yahoo groups: http://health.groups.yahoo.com/group/myfatherhasalzheimers/messages http://health.groups.yahoo.com/group/tauopathies/messages
p.s. In the closed thread about the use of coconut oil for someone with Down's Syndrome and Alzheimer's disease, my request for a vote was asking if people wanted me to continue posting here or not. If you want me to continue passing on information to you, you will have to tell the board administrator. The administrator hasn't deleted my account yet, so I guess her vote is, "yes". The best solution would be to add another "category" to the message board for people to discuss medications and treatments.
"And that's all I will say about this topic on this message board." OKAY.
Swarfmaker, as has been noted many times before, so often the decisions we have to make re: our AD spouses involve value judgments. Some are contrary to your viewpoint laid out above. You're clearly entitled to your opinions and beliefs, as are each of us. No one knows our spouses better than we do, knows better (if anyone does) how they would want to live and die. I have very strong feelings about end of life issues, but they are my personal feelings and I would not try to impose them on someone else who thinks differently.
Life is tough enough for those dealing with AD without someone "judging and condemning" the sincere beliefs of others. I think it is sad that the essence of "support and friendship" as exhibited here every day escapes you. Peace.
Folly. thank you, I agree that everyone's opinions must be RESPECTED here. I agree with Swarfmaker that information should be freely available to everyone and that attempts to suppress it are suspect.
Thank you both. Since my husband's diagnosis in January, I spent the next 6 months consumed on the internet researching. I read here and anywhere I could find the smallest bit of hope. Looking for something that gave more hope than AD drugs - from big studies to small studies. I brought up a couple to the Neurologist last month and she had never heard of them. But, she said it can't hurt trying them so he is taking Korean Red Ginseng because a small study in Korean showed it might dissolve the plaque. I am also going to get some curcumin (I think it was previous mentioned on another thread).
I believe everyone here has done the same thing - research, research and more research. Most of us are probably researched out.
Kathi37 - great news. 28 and above is considered normal but we all know from Joan's experience they can score high on the MMSE but still have problems in other areas.
I was researching last night thinking about paying for the Namenda since the VA won't yet. There seems to be so much more improvement/stabilizing when on the combo. It was from a preview of 'Clinical Alzheimer Rehabilitation". It says if after 6 months to a year there is no improvement or stabilizing, then the drug should be stopped as it is not doing any good. Art went from 27 in January to 23 in July. He is on galantamine and evidently is not doing anything to slow the symptoms. I also wonder if depression is bringing it down. The neuropsychologist recommended upping his anti-depressant but the neuro didn't mention it.
I am hoping this will work... read the other thread and WOW.. what a job Sunshyne did on the research. NICE! Thanks Sunshyne... I am really impressed with what everyone posted on here so I am going to give it a shot! We all know there is no cure YET but we all know that there has to be a way to slow it down till we find the cure! I will post when I get the product and am going to give a the MMSE test before starting this regiment... She takes this test every 6 months at her neuro... the last time she went to the doctor it had only been 4 months and she had lost 3 points... which is a lot for only 4 months. Her neuro said that the average point loss on the MMSE is 2 points per year. So I am worried... I am going to do this test with her once a week after starting the MCT Gold and keep you all updated on the progress. Thanks to all who have posted on this thread and I hope to get to know you all better as I go through this process with you! I am going to order the softgels for traveling too... makes sense so we don't miss a dose. I posted this on the other thread too... not sure where I will be posting all my updates yet...lol
2 points a year?? My husband went down 4 points in 6 months - 27 to 23.
I was watching a program today where there was an AIDS patient. Made me think how quickly the government pushed (with the homosexual community pressuring them) for drugs to slow down or cure it and it was done. Many are now testing HIV negative, others will have 20 or more years of quality life because of the 'cocktail' of drugs they take. And this for a disease that the majority had control over whether they got the virus or not.
AD and other dementias - as far as we know, our spouses did nothing to cause it. They don't even know the cause of it. Why is our government not as passionate? I guess we don't have the homosexual community pressuring them.
Dear Swarfmaker, I can totally relate to your frustration with having posts deleted when you are just trying to get information out to people who may not have it yet. I have had some of mine deleted as well. When Steve and I attended the Public Forums in D.C. in March 09 which are sponsored by the Alzheimer's Association, I was passing out copies of my article during the breaks, stating "this is a case study about my husband." My feeling was, here are 500 people involved with caring for people with AD and some of them even had AD themselves, perhaps this will help some of them and they can take it back to their support groups, etc. At one point, as I passed them out, the director of the Public Policy division of the Alz Assoc gets on the mike and announces that two of the "advocates" from Florida (Steve and I) were passing out information about coconut oil and that we should discontinue doing so, since it might confuse people about what the purpose of the meeting was at that point. I had a discussion with him afterward, asking if he had any family members with AD, and he said, yes he had lost family members. I said back to him, that if there was a simple OTC dietary intervention that could have helped his family members, wouldn't he at least want to know about it so that he could decide whether to try it or not? He had no reply. I feel like the Alz Assoc is trying to "protect" people from this information as if they are children. People should be given the information and at least have the chance to weigh the pros and cons for themselves.
I am putting together an anonymous spreadsheet of people who have contacted me regarding a response (or lack of) to coconut oil and/or MCT oil and/or Axona for the purpose of trying to get funding for Dr. Veech's ketone ester research at the NIH. The specific information I need is the person's age, sex, diagnosis, if known, what forms(s) of the oil they have been using, their response in as much detail as possible, and any side effects, such as diarrhea; also if the cholesterol, triglyceride profile has been checked, the results would be very helpful also. To participate, you can email me at preemiedoctor@aol.com, or to remain totally anonymous, include the information in a post here and I will keep an eye out.
As I have said before, this ester will make it possible to get considerably higher levels of ketones than the oils. When I wrote my article "What if there was a cure for AD and no one knew?" the cure I am referring to is the ketones, not so much the coconut oil. Dr. Veech is finishing human toxicity testing this month on healthy subjects, reaching levels about 15 times what were measured with Steve on coconut oil, and there have been no adverse effects. He has also learned that there appears to be more to the ketone effect than just working as an alternative fuel; ketones also appear to be involved with growth of new neurons and nerves. He is able to make about 10 pounds of the ketone ester a week in his lab, but needs funding for a facility to make it in much larger quantity to test in AD, Parkinson's and other neurodegenerative diseases.
Dr. Newport, I don't know if I have said this before, but I want you to know how grateful I am for your persistance in getting this information out. It has made such a difference for us. Thank you!!!!! Lori
I would be interested in an update on use of MCT and coconut oil. My AH has been on Axona almost 2 mo.Actually saw a decline. The neurologist said no sense in wasting the money.His experience is that if there is going to be an improvement it is in first month.He had never heard of MCT oil but said to give it a try,nothing to lose. I bought coconut oil capsules, will they do ? also got the MCT powder ,any comments on using that?No instructions came with,how do I know amt. to give? Please,any info will be greatly appreciated.
yhouniey - do a search for the other threads on coconut oil and you will find what others recommend for dosage and also mixed in the threads are some delicious recipes for coconut fudge and other things.
Coconut oil and diarrhea- please help! I'm having lots of trouble getting DH adjusted to coconut oil. I cut back to 1 tsp a day- still problems! Any tips for helping his system accept it?
I stopped the oil as I could not see any improvement. However, she continued with diarrhea, so I am now giving her 1/2 of an Immodium tablet (0.5 mg) every morning. This seems to be working
i saw improvements with the coconut oil but diarrhea was also the factor i gave it up. try the jenny's coconut macarrons they are delish if you can find them. i got them in the whole foods store.
you have to start out very slowly with the coconut oil. divvi
Yes, slow is key. I found that out the hard way! But I don't want to give up yet since I have seen some small improvements. I'm going to try 1tsp daily if that doesn't do the trick then down to 1/2 tsp daily until I see he can tolerate it then SLOWLYwork our way up. Marsh, I ran into BIG problems giving 1 Immodium tablet daily. No problems with 1/2tablet daily? Poor DH got all stopped up then finally had HUGE explosion that I had to clean up for days. Yuck, what a mess I'll never do that again!
Fortunately for me, my husband had a real problem with constipation so we had no diarrhea problems when starting MCT oil. He has been on it for 16 months now--2 to 3 tbsp daily. He had improvement at the first that was apparent to anyone who knew him. Since then, there has been an additional slow, gradual improvement.
The one problem has been a weight gain. So, you make a decision--do you want memory improvement or a flat tummy?
DH has had loose stools for 10 days now and I'm just sick and tired of constantly cleaning up the mess! Last Saturday was such a mess- I must've put him in the shower 8-10 times. We never left the house all week end! Can anyone help me with this?! I've stopped the coconut oil, he hasn't had any for 4 days now, what else can I do about this problem?!!!!!!!!!!!!!!!
Yes, but the immodium stopped him up and as I said in a previous entry then all hell broke loose! So I feel like I can't win. Does the MCT fuel or oil have the same effect as coconut oil?