ok i tried -hes way beyond the clock i think..i drew one and asked him to copy it. he signed his name not so good then said as he wrote -florida..strange..he got florida correct in spelling..hahha...i dated too. will try new things in a few days...intersting i have to say! but hey, he did go potty himself, thank goodness for small favors. divvi
Divvi, coincidence or not, thats great! Keep us posted. I wrote down the name of the oil you bought. Hope I can find it in our little health food store here.
ok Nikki, let us know. ..Imohr, thats awesome. me too its just too outrageous to think something may actually come of this. i am doing it cause i am sort of esoteric anyway. :) and i dont see any harm..divvi
Nikki, you can always buy on-line. That Tropical Traditions website sells several different kinds, some of which still have the scent and flavor of coconuts and some which are flavorless, plus they have the coconut cream concentrate:
http://www.tropicaltraditions.com
And I know there are healthfood stores that sell coconut oil on-line, I've tripped across a bunch while looking for more information. Coconut oil has a bunch of other stuff in it, so the amount of MCT oil that you're eating isn't very high. Apparently, some places also sell MCT oil, athletes use it, etc. Been checking into that, to see if any of it is the same triglyceride that Accera uses in their Axona.
Tropical Traditions also talks about how you can cook with coconut oil (the only thing you shouldn't do is to try to use it for deep-fat frying), and has a bunch of recipes that look deeeeeevine:
Nikki and anyone else who is interested. go to healthsuperstore.com just to read about the jarrows extra virgen coconut oil. they have a lot of info about it there and what all it can do for health issues. AND its 6.79! i paid 13dol but i got it and took it right away. so i didnt mind not having to wait for it but i may buy later here. if what is written here is true, then its amazing stuff, divvi
I paid $20.00 for a 16oz jar at the Health Food Store for the Tropical Brand and they have it on their website buy a larger one and get one free, I believe.
divvi, darling, don't believe EVERYTHING you read. <grin> You're not going to be a very objective evaluator on this private clinical trial.
I do want to emphasize again, every web site I've seen so far (even those that say coconut oil is a miracle cure) says that you can get diarrhea, and severe stomach cramps, if you don't start low and work your way up gradually.
hahaha!!! sunshyne thats my downfall i am soooo very gullible..:) i am having a good time with this i have to admit, and maybe it will make a change for the good. who knows! divvi
i know,SS! i come from eating coconuts directly off the tree:) and that organic coconut milk and tropical drinks left me with lots of knowledge in that dept.:). but the good thing is if you get diarhea you can eat the coconut meat and get constipated..hahahah..divvi
divvi-you're right. People's Pharmacy has long touted macaroons as a cure fr diarrhea. I wonder if the coconut oil will help with weight loss as one of the sites claims. I just hope this isn't one big hoax. As Bill is just about end stage I am thinking about giving it to him-nothing to loose.
Bluedaze, well lets not get overexcited as of yet. imohr and i decided to go ahead with our own clincals and see what happens. who knows, some medical marvels have come to light over some insignificant things-who would have guessed mold and penicillin had anything in common?? :) this can give diarrehea, and just to be sure, i know my DH doesnt have high colesterol so i feel ok with a tbls per day for now. i do want to keep a journal like imohr with some new tests just to see. we dont have anything other than Dr Newport's opinion to go on at this point...but like we've said before whats to lose as long as you think your loved one can handle it...divvi
I started giving my DH 2 tablesppons in his morning oatmeal about 5 days ago. No diarrhea. I have not noticed any significant improvement in his cognition.
Thanks for the information. I went to the site you showed divvi and order some. I will still go look tomorrow at our local store. But thought I would plan ahead and buy some extra now too. Our other vitamins and supplement are much cheaper too thanks!
OK, it sounds like it's worth a try...i ordered some online! Although my DH has the APOE-4 gene, I thought we'd try it. Keep the updates coming from those who are trying it.
FLgirl, the MCT that Accera has been studying helps APOE4 patients, just not as much as those who don't carry the allele. During the clinical trials, APOE4+ patients given Axona held steady for nine months (the length of the trial), in comparison with the placebo group, which declined.
The only thing that might be a problem with coconut oil is that it has a lot of other things in it, so you don't get as much of the "active ingredient." Newport's calculations assume that all MCTs are equally effective, and there's no evidence to support that. Also, I haven't double-checked her calculations, but I suspect she did not take molecular weight into account when trying to extrapolate from the amount of caprylic acid in Axona to the amounts of MCTs in coconut oil.
I asked Dr Henderson about APOE4 patients. He thinks they may have a "simple fix" to help MCTs work better for them, based on genetic information.
Also, MCTs are a different type of fatty acid than "essential fatty acids" (fish oil, Omega-3, EPA/DHA, whatever you want to call them.) It appears that both types may be even more helpful in combination than given separately.
Sunshyne, I tried to download the article by Dr. Henderson, but my printer fouled up. Could you send me a copy by e-mail (flyingswan8082@yahoo.com). I am really interested in trying this for my wife, but would like to get more information so I can discuss it with her doctor. Thanks.
OK folks, we have been using it for about a week, hubby was more active this last weekend, helped with yard work and felt better. I bought a book at the health food store and it has lots of good information and some good recipes. I bought rum and am going to try the pina colada smoothie for ME. We are putting it in oatmeal but you can add it to anything. I greased my brownie pan with it. I now use it for all kinds of things.
Pina Coladas does sound good. How about posting your recipe on the recipe thread. All right, now, let's hear from you other lurkers who are trying the cocanut oil.............I am still doing 1 fish oil and 1 flaxseed oil.
1cup coconut milk 2 14-ounce cans pineapple chunks in their juice or 1 and a half cups of fresh pineapple 1/3 cup cream of coconut 3 Tablespoons sugar (optional) Process in the blender
ADD YOUR RUM as needed! a shot a glass and for those who don't drink it is great without! For our group Lets add
Gerry, how much coconut oil are you using? I think the article says you need 7 teaspoons all taken at the same time. I believe Dr. Newport was giving this amount twice a day. Also, did you start out with a smaller amount and build up? Did you have a problem with diarrhea or stomach cramps?
Dazed, that would be a LOT of saturated fat. I would be afraid to use more than a Tablespoon a day. It says on the container 15 grams of fat per Tablespoon. I don't understand being able to consume that much fat without a problem. Maybe the diarrhea is the problem?
I may need to go back and read that article again. I think it said 7 teaspoons or 35 grams of coconut fat in food or drinks. Yes, Imohr, I would be afraid to start out at that amount.
lmohr, there are many different types of "fat", and some of them (including medium-chain triglycerides) are actually pretty healthy for you. It's the LONG chain triglycerides that cause a problem. Long-chain triglycerides are typically stored in the body as fat. MCTs are very different -- they are burned for energy, and are NOT stored in the body at all. Unless you consume ridiculously high amounts, they do not raise your cholesterol. In fact, there are reports that MCTs can even help improve the LDL to HDL cholesterol ratio, especially in women.
So, on a slightly different subject ... I had seen, but not really paid attention to, papers that mention MCTs may be able to help treat other neurodegenerative diseases, such as Parkinsons and drug resistant epilepsy, since a ketogenic diet has been found to be helpful in some cases.
It didn't hit me until this morning, that perhaps MCT oil or coconut oil (or Axona) might help reduce the myoclonic jerks and/or seizures some AD spouses have been having. I saw a post on another discussion forum by a woman whose son has epilepsy; he is on the Atkins diet (ketogenic) and she said, "MCT oil is vital in keeping his seizures at bay. He takes a tablespoon with every meal and this gets him in a very very deep ketosis. The MCT is very ketogenic and it is used specifically for getting ketones as high as possible - because usually the best seizure control comes from high levels of ketones. Dr.s add MCT oil to the diet of kids who have a hard time getting into deep ketosis." (It doesn't take very much of the MCT oil to induce deep ketosis, since the son is already on a ketogenic diet.)
Marshall, after you've had a chance to digest the papers I sent you ... what do you think? Might MCTs help Kadee's husband?
Sunshyne thats good work. interesting thought. mine also suffers MJerks and on 200mg once a morning and its working so far =believe it or not in just a few days he has done some things that were out of the ordinary like pooping in thte bathroom by himself and even locating it first, then he got on a scale for me to weigh him after 1yr, and in general seems more alert. now i do have something to report aside from the AD...i have been upping my tsb to 2 xday and i swear my hot flashes have subsided and if when i do have they arent as bothersome. i can absolutely report this as i am the one with the befores and afters. i will continue dosing and maybe upping to another tsb. after i was surprised of the dramatic decrease i googled coconut oil and hot flashes and found other sites claiming it is indeed good to diminish these annoying issues...so the saga continues..SS maybe you can find some input into the 'flashing' - i KNOW how many of us ladies would be so appreciative of any feedback on this subject. i am waiting as i speak for the lab results for my bioidentical hormones cremes to be rx'd...whew...this is torment as much as caregiving..divvi
I can't decide whether this is "worth it" at this point in my DH's disease. This may sound harsh, but unless it could bring him back to fully active, fully cognizant I don't know that I'd do it. I do not want to back track slightly or even stall his progression if it means it might just be prolonging the course of AD.
New Realm, I'm in a similar situation. Also we have a doctor's visit coming soon for him, and I'm going to ask if there is a problem with him taking it because of all of the medications.
But if I get the OK, just keeping him out of diapers would be wonderful. At this point he has no bathroom issues and is still doing all of his own showering, etc. If I could keep him there it would be great.
I don't think anything would change the time line. Dementias are terminal diseases. Even the drugs just keep them high functioning longer. They still die when they would have died with no drugs as far as anyone can tell.
Starling, I agree with you on everything you just said....they were exactly my thoughts. Divvi, as we all know well, had big poop problems, and if coconut oil stops them for her husband, I'm getting some coconut oil for mine, though he hasn't had the bathroom issue yet either.
And, I don't think it will effect the time line either. Most of us are hoping that our spouses can stay functioning until they go peacefully.
I've been cheering Divvi on each day! You can just FEEL her cheerfulness....and NOW she is giving me hope of ending hot flashes! WOW! <grin>
you k now the saying friends,Any small step for mankind...is good in my book! :) and mary, i can feel somewhat relief for the flashing even after only 4days..i plan on uppping the dose and will let you k now..plus good quality vit E helps too. i am not saying his 'bathroom' issues are solved by any means. just that he FOUND the bathroom and used it on his own was a biggy for me. now lets see how today goes:) divvi
Been thinking of just buying the MCT oil in either liquid or soft gels.
I'll be speaking with the doctor this week. I hope tonight or tomorrow. My only concern is that he may know next to nothing about any of this. What exactly should we explain to the doctor? Should we show them the article?
What is the ramp up schedule if you start with 1 teaspoon? I have to go back and read the articles again, but I'm getting my game face on to get ready to go for the LP with the wife tomorrow. guy
my gosh, i just wondered if the ladies here who are in the menopausal stage WITH AD are having the flashing and issues on top of it all and have no relief from this as well.. oh my, how dreadful but i guess it would be happening to them as well? . double misery. wow. Guy, we will be thinking of you and xxxx fingers all goes well. divvi
hey, i find the best taste and easy way to down the coconut oil is in a cup of applesauce! heavenly! divvi out to buy more today! and the slight reserve of oil on your lips should do nicely come winter and dry lips!:)
Guy, I've been looking at different alternatives. There are different MCT oils, and then different coconut oil preparations have different amounts of the various MCTs.
The MCT that Accera has tested the most is caprylic acid, which is C8 (has an eight-carbon chain). They also did a little bit with a mixture of caprylic/capric triglycerides (capric acid has a 10-carbon chain), and did not see a significant difference in patient response. (It's not clear that they did enough work with the mixture to SEE a difference, however.)
Coconut oils typically run around 50-60% lauric acid, which is C12, plus 15-20% C14, and even a fair amount (~10% total) of C16 and C18 (now we're getting up into the "long chain triglycerides", which aren't so good for you). They have only 5-10% C8 and another ~5% C10.
"MCT oil" is sold at a lot of health food stores. I've found a couple different brands, and they both contain a mixture of just the C8 and C10 MCTs. It's my understanding they don't have any flavor.
So I'm kind of leaning toward MCT oil right now. I would think they'd be more likely to produce a bit more of the "ketone bodies" per gram than the longer chain MCTs. Although, who knows, maybe the slightly longer chain MCTs would be better, for some reason...
There are all sorts of people running around claiming to have gotten benefit from all sorts of bizarre things, so I, personally, would kind of hesitate to offer a newspaper article as evidence -- the doctor might be just as likely to brush it off as another crackpot without even listening to you.
I think I'd be more likely to tell the doctor that Accera is developing a new treatment for treating AD. They have received FDA approval for a "medical food" that has, as its active ingredient, caprylic acid; and their publications and patents show how much of the caprylic acid they've been giving to patients in the clinical trials.
Accera's med has been given to AD patients who are on conventional AD meds such as aricept and namenda, as well as those who are not taking any AD meds, and it had a good safety profile.
Accera's new med won't be available for several months yet. However, you know that caprylic acid and related MCTs are available, now, over-the-counter from health food stores, either as a purified MCT oil or as more of a mixture in coconut oil. From all accounts, these oils appear to be pretty good for you. Body builders use MCT oil to improve their lean body mass, and athletes use it as a source of fuel when their bodies run out of carbohydrates. In fact, doctors used to add MCT oil to formula for premature infants, to add calories, and MCT and coconut oils are currently added to premature and full term infant formulas, along with several other oils, to mimic breast milk.
Some caregivers have started giving these oils to AD patients -- for example, cooking with coconut oil instead of other types of fats -- and believe that they're seeing an improvement. Also, people in countries where they routinely cook with coconut oil and meat tend to have far lower rates of AD.
So ... does the doctor see any potential harm in changing your wife's diet (and your own) to more of a "Mediterranean" diet, lots of fish, fruits, and vegetables, and cooking with coconut oil or MCT oil ... ?
My DH's next appointment is next week and that's exactly what I'm going to tell/ask them. I just returned from the health food store and have a 16 oz. jar of raw, extra virgin, certified organic, undeodorized, unprocessed, unrefined and unheated coconut oil. Directions say to take 1 tablespoon 3 times a day with meals.
I would like to try DH on this before his next MMSE next week to see if there's any improvement. Please help me with how much to start out with.
try one teaspoon today and see how he does. then if no ill effecx try one in am and one pm then you can adjust.. i think all of us starting out slowly ...divvi i am up to 3tsp xday.