Hey everyone,

This is my first post here but I've been lurking in the background and reading all the boards and using your suggestions and tips anyway I can. I feel it's only fair to post any results we've had from your suggestions and I hope anyone else like me will also post their results.

I'm a caretaker for a 63 yr. old lady with Down Syndrome. She is 4ft. 6 in. tall and weighs 117 lbs. She's part of our family and has been with us for 26 yrs. I work for the DHHR and have a Specialized Family Care Home. So I'm bound by Hippa laws but I think it's okay as long as I don't give out her name or mine.

As you know, all people with Down Syndrome will get Alzheimer's. I didn't know anything about this until about 6 yrs. ago. In the last year especially, I have learned so much more about this disease.

My lady didn't start displaying any symptoms until about 3 years ago and they were mild. A year ago she had 2 traumatic events in her life just 2 months apart, which were the deaths of 2 other people in our home who were like her siblings. This threw her into a rapid and deep decline that I never knew was possible this quickly. One day she could do everything for herself and almost vitually the next day she couldn't do anything at all for herself. She went from doing most personal care and daily living skills for herself to not even being able to wash herself or even to get a drink if she was thirsty. She had to be taken to the bathroom and have everything done for her, where before she was going completely on her own. She had numerous health problems and depression after their deaths which were a result of the stress and emotional upheavel.

She rapidly declined even more over the next months until Feb. 09. She forgot who people were and forgot my name, the days of the week etc. She developed the Pisa Syndrome (leaning extremely to the left) and was losing her speech such as words or the ability to talk in sentences etc. etc.

I've been waiting for the clinical trials with Bryostatin to start at the Blanche Rockefeller Neurological Institute which were scheduled to start last summer. But I can see now that the FDA is not going to approve these trials until God knows when. I don't understand this dragging around on their part. Sorry about that, that's another topic all together different from my post.

Anyway, I was searching, and searching everywhere for some kind of help for her. I ran across your website and found the perfect place for info. I read the boards about the coconut oil and the Newports so I thought what do we have to lose? It's only coconut oil and not a medication that may interfere with her other meds. And so I started adding the coconut oil to her diet. We started out slowly and I only gave her one teaspoon 2 times a day. And then slowly built up to 3 tablespoons a day after about 2 weeks. I now give her 1 tablespoon with each meal and use it in place of butter or oils or mix it directly in her hot foods.

She has improved since starting the coconut oil on Feb. 14th 2009. (It is now April 3rd 2009).

Her speech has improved. She is talking in small sentences and using words I haven't heard in a long time. She still will get her speech mangled at times but at least she knows it and says "I stutter too much" or "I get tongue tied".

She has improved with certain steps in some of her living skills, for example when going to the bathroom she will pull her own pants down instead of waiting for me to do it or just standing there lost. She has improved with many other things also. She still needs verbal and physical promts but certain steps of what needs to be done is improving. She is showing improvement in almost all of her daily skills and mental attitude and this is with not only the hardships of Alzheimer's but also having Down Syndrome.

She has more energy and has stopped saying she's tired when she has done something just a little physical. She has become more independant when it comes to doing something for herself and will wave me away or tell me she can do it herself. She was always very independent and liked to do everything for herself. I'm glad to see this coming back.

She has also stopped leaning to the left almost entirely. She would virtually lay on her left arm when she sat at the table and ate. No matter how I tried to keep her upright she would automatically lean to the left. If you sat on her left side, she would be almost laying on you. She no longer does this at all.

She can follow the conversation and have a pretty good idea about what is going on. She is doing this with TV shows too.

She is walking better and her balance is so much better. She is always laughing now and never stops moving or joking.

She occasionally has some sad periods but that's because she now remembers the deaths of her friends all the time now and misses them at times. Before she would forget they died and I had to tell her again what happened. This was pitiful because she was experiencing their deaths over and over again. It was just heartbreaking to see.

I wanted to let you know of her progress and I will post more if she shows more improvement or if she doesn't. If the coconut oil keeps the Alzheimer's on hold and she stays where she's at, I will be happy. I'd like to see her gain back what she lost in the last year, but if she doesn't then that's okay if she justs maintains.

Something else I discovered this past year is that my lady is the exception to the rule when it comes to getting Alzheimer's. Most of the people with Down Syndrome start showing symptoms when they are in their 40's or 50's but she didn't really show symptoms until about 60. I'm going to list her meds. here so if anyone reading this has someone with Down Syndrome, they will know exactly what my lady has taken and for how long in case it might help them with their loved one.

Her niece told me that her mother gave her an aspirin every night before she went to bed because she thought it helped her sleep better. I don't know if this is what helped her or not, but I thought I should mention it.

She has taken a Multivitamin and Synthroid for years and has taken 1 aspirin, 400 units of vit. E and 500mg of vit. C and a monthly shot of 1000mcg of B-12 for the last 6 yrs. She has been taking Namenda for the last 2 1/2 yrs and Aricept for the last year after changing from Exelon which she took for 2 years. She also takes Boniva and Calcium with vit. D. She started taking Fish Oil 1000mg 2x's a day in August of 2008. She also takes 1 Immodium a day for diarrhea. She was always plagued with bouts of diarrhea until starting this a few years ago. The doctor said she could take up to 8 a day if needed, but the most I've ever given her is 3 a day and only when needed. She also takes Metamucil every day for fiber which has also helped to curb the diarrhea. She also eats one 6oz. container of yogurt a day and drinks 8oz of Cranberry juice a day. She has always eaten all foods and had no special diet. We started the coconut oil in Feb. 2009.

I hope this helps anyone who reads it and I truly apologize for the length of this post, but I don't post very much and I wanted to be sure that I had everything here in case there is some brave person out there who reads it all, and needs some help.

One more item, I'm going to start giving her some MCT oil along with the coconut oil. I will decrease the CO and then add some MCT oil so that she has a mixture of both. I will start this next week and I'll keep you updated if anything changes.

Thank you for sharing your story. Sounds like she is very lucky to have you as her caregiver. Please keep us posted.

Hey, thanks so much! I'll try it on my dad. He's a health freak, so eats healthy, takes his vites, and gets anxiety from not being able to work as hard as he wants. Yeah, and his mind is gone, but he's extremely physically fit. Yikes. I will try cocoanut oil, be careful of the higher cholesterol, if your AD person may have elevated cholesterol as a result of the cocoanut oil. My dad has no problems with blood pressure, or cholesterol, we're just going to cook with it for a month and see if it makes any difference.

Thanks again for the great idea.

I read somewhere about people giving their Down Syndrome children Prozac. They said it promoted the regeneration of neurons. There was the cocktail of stuff. I don't remember the other things in it. Sounds rather fantastic, but who knows? I wouldn't have thought that common things like cinnamon or coconut oil would help either.

Oh... I found the message I posted about this. I'll copy it here:

Prozac (Fluoxetine)

Prozac - The University Of Maryland School Of Medicine treated Down syndrome mice with prozac for 24 days (2006). It increased neurogenesis (the formation of new nerves) to a normal level (View details). This is like increasing the hardware on your computer. It allows you to run more complicated software. In fetuses with Down syndrome, neurons fail to show normal dendritic development, yielding a "tree in winter" appearance. This developmental failure is thought to result in mental retardation

http://www.changingmindsfoundation.com/education.html

Wow...had not heard that about Prozac. Ty

thanks for the info about Prozac. I've never heard of this before. I've been reading the material at the website, Changing Minds and it's very interesting. I wonder if it would have any effect on my lady? I'll research this some more. Thank you!

She is showing more improvement almost each day. She is remembering the days of the week from Mon. to Thurs. but still has trouble remembering what day today is, but when you prompt her to with "if yesterday was Monday then today is...." she remembers it's Tuesday and then she says the next day is Wednesday and the next day is Thursday. Also this weekend I held up 5 fingers she instantly said 5 and when I held up the other 5 fingers she instantly said 10. I don't even remember when she last was able to compute numbers. She is remembering more and more words. This weekend she also remembered the months of April May June and July without prompting.

I should have mentioned in my earlier post that before the Alzheimer's she could communicate extremely well and could care for herself, clean house with very little help. She could actually run my house as well as I could. She could write and do math on a first grade level. Fix simple meals. She was very high functioning and very intelligent with common sense knowledge. She would watch the news and knew what was going on and what it meant. She could answer the phone and take messages. She was very self sufficient.

The coconut oil is really working for her, and she has bloodwork done on a regular basis so I'll be able to keep an eye on her cholesteral. The last bloodwork done was about 2 weeks after she started the oil and it had dropped a little from 3 months before. We'll know more after the next tests are done in a couple of months. She has gained 3 pounds.

I'll keep this updated as she progresses.

i can see the improvement in mom as well...improved cognitive skills. more likely to engage even if the words do not easily come to her. when she is does with coconut oil, word choices and ability to understand her are improved. have not added mct oil

Wanted to let you know that I added MCT Oil to the coconut oil. I decreased coconut oil to 2 teaspoons and added 1 teaspoon of MCT oil to equal 1 tablespoon. I give this 3 times a day at meals. It has been 1 week and I've seen more improvement. More words being spoken that I haven't heard for a long time. Also, when going to bathroom, I always have to verbally prompt to remove depends etc. and have to Verbally prompt to get a clean one and to sit back down and put it on. Yesterday, I left the bathroom when she was finished going and came back in to check on her, which I do, because she is still able to pull up her own clothes and this gives her more independance. I always wait around the corner to see if she will flush and wash her hands. This time I went back in and she had pulled up her clothes and was sitting on the toilet seat lid and was putting a pair of Depends on by herself. Of course she was putting them on over her pants - but she had gotten up and walked over and got a depend out of the package and was putting them on by herself. She hasn't done this at all since last summer. This is an improvement and I hope the next time she will put the depends on under her pants.

She also has improved with many small things such as when making her bed she will pull up the blanket too instead of just the sheet without any verbal prompts. I believe in having the person do everything they can for themselves even though it takes hours more time. If the oil is unlocking memories and/or creating new connections, the person will have to be trained to learn or re-learn skills. So this is why I have her do everything possible for herself. I'll update with any more results.

You know... I get the impression from what we've seen ourselves with my mother, and what I've read from other people on this site, from Dr. Newport, and on two other message boards (www.thealzheimerspouse.com and the Lewy Body Dementia Association) that the improvements may go on for several months, just as the decline was slow. So, it may be that the continued use of MCT oil, in whatever form, is more responsible for the continued improvement than the change from coconut oil to refined MCT oil.

I should note again, as I have in the past, that my mother has been given conflicting diagnoses. One neurologist said AD, another, a "movement disorder specialist" said "corticobasal ganglionic degeneration" or CBD. This malady shares several characteristics with AD such as the "chronic brain starvation" type III diabetes and tau protein corruption, but does not involve the entire brain, at first, and amyloid beta plaques are not a significant feature. However, there is no way to know for sure exactly what she has without a brain biopsy, and there is no reason to do that at this time. So, I we give her stuff that will help either condition.

For anyone who stumbles across this message in a search for information about CBD (a.k.a. CBGD or corticobasal degeneration) please take note that my mother is one case of clinically diagnosed CBD where the supplements cinnamon and coconut oil/MCT oil have arrested the progression. I believe it. I would strongly urge anyone with ANY of these neurodegenerative diseases to not wait for clinical studies. You just don't have the luxury of time. Take matters into your own hands and try the things discussed on this message board. You have a LOT to choose from and try. The idea of using most of these has come about in only the last 2 years, or even the last year. Many people in the medical community, and even in the alternative health community don't even know about them yet. Few have tried them. We don't know how long the positive effects will last, but we do know that if we had waited, our loved ones would have just continued to decline over that same period that they have now improved.

What do I get out of this? Nothing. I just wish someone would have been able to tell me about these things five years ago. I might have been able to preserve more of my mother's mental abilities. So, I'm want to give others caring for someone not so advanced the chance that I did not have.

Amelia---I've been following this thread since its inception and want to thank you for keeping us posted. Please continue.

The improvements that you have encountered are truly amazing. They equal (or surpass) everything that I've read on the Enbrel thread and have the advantage of having been obtained at a fraction of the Enbrel cost.

Thank you everyone for all the help I've received from all the discussions on this board. I have found the most information and ideas here than I've found anywhere else.

I don't know if it is the continued use of the coconut oil or the added MCT oil because she was making very good progress on the coconut oil. I added the MCT oil because it has a more concentrated form of the caprillic acid but I am going to continue with the coconut oil because it helped her so much. It's been about 2 months since we started the CO so it might be that it is really starting to have an effect now.

I don't know why, but I just have the feeling that the CO is either unlocking brain cells or making new connections because the improvements that she's making are like when I do training with her. This is part of my job to do training with my clients. We have programs written by a behavior specialist such as for bathing, shaving, money management etc. It is a series of steps done in the same order each day to teach them to do tasks for themselves. Over the past year when her AD took such a drastic change, she hadn't made any progress and had declined. No matter how long we worked it just wasn't helping.

But now she is improving with the steps of the task and has even learned a few new small things. For example, every night I have her get her container for her dentures, I tell her to go the bathroom sink and turn the water on and fill it half full, then shut the water off, turn off the light, and put the container on the dresser, and then put her dentures in the water, and get a tablet and open it, put it in the water and throw the paper away.

She used to not even understand what the container was for, and I had to take her hands and do all the steps with many physical prompts. She didn't know how to turn the water on and off and would just keep putting water in the container and then dump it out. She wouldn't even recognize the box with the tablets in it. She would only take out her dentures after much verbal prompting.

In the last few weeks she has improved much with this task. Now I only have to tell her to take her container and put some water in it for her dentures and by herself, she will take it into the bathroom and turn on the water and put water in it and then shut the water off and bring it back in the bedroom. I then only have to tell her one time to put her teeth in the water and she will do it and most of the time now she will put both dentures in. Now I just have to tap on the box and tell her to get a tablet and most of the time now she will reach in the box and get it. She has trouble opening the package, but once opened, she then asks me if she puts it in the water and sometimes will do it without asking. This is what I mean about the improvements she is making in a lot of different living skills. This isn't the only thing she has improved with.

This is something that she did completely for herself independantly before the AD. She hasn't been able to do any of the above steps in over a year.

Sorry this is so long, but I just wanted to let you know the kind on improvement she has made. I realize that this isn't a super huge improvement but for her it is a major one. This is only after a couple of months on the CO. I know that this kind of thing is very repetitous and time consuming, but for training in any skills this is what is needed. It has to be the same steps, in the same order each time and must be repeated over and over. This is what it takes for someone with disabilities to learn, but sooner or later, they will learn how to do it.

This is just the impression that I'm getting now with my lady. It feels like the training we have done in the past for other things before she got AD. I would have to say that someone who has AD and is taking the CO and is showing improvement would have to be considered as developementally disabled and must learn these things again.

I wish too that I had known about this even a year ago. It would have probably saved many more skills that I took for granted at the time and now I wish with all my heart that she could just do 1/4 of those things now.

This is just my opinion and my impressions, but if you have someone who is showing improvement with the CO, it might help to do this kind of training with them for maybe just a few skills that you would like to see them regain. It is time consuming and repetitious but if they are unlocking cells or making new connections, sooner or later it might kick in.

Another improvement today, she put clean sheets on her bed and put her pillowcase on with only a few verbal prompts. This isn't somthing we have been working on but it is something she used to do for herself. I would call this unlocking some memories. This is something she hasn't done since last summer.

All I can say is Thank God for the Coconut Trees! and for this message board.

I hope the effect last indefinitely, and that there are no bad side effects.

I hope the effects last too! I talked to her Dr. and he said there was no problem with giving her cinnamon, so I will start giving her the cinnamon in a couple of weeks after the MCT oil has a chance to kick in. I'd really like to start her on some curcumin too. This sounds very promising also.

Thanks for your suggestions and research on all of this.

If anyone has the time, could you maybe post something that your loved one has improved with and how you helped them or if it came back to them on their own?

Thanks!

swarfmaker, I see where this has stopped your mother's decline and that is good news. I have to agree with you that I believe it too. I've seen it with my lady and I will say again, even if she doesn't improve much more, I will be completely thankful if she doesn't get worse. All I want is for her to be happy and to at least be aware of herself and life in general.

I have been absent but moved Mother into our home in Jan.

I started her on the MCT oils and Coconut Organics in mid FeB...

She is now on Axona for 2 days. I stopped all other oils and we will try her on this for the 45 day period.

I also asked her permission and she is open to being on Axona. She likes the taste.

She is 66 YO and mid stages, still wears pantyhose every single day, and still puts on make up and removes it, still is dependent on 2 alarm clocks and shops Macys.

Her HMO which is Blue Shield wont cover due to it being a food med.

She will pay after Axona coupon 78.00/mo.

My Mom agreed to get the rx, and she is on a 7 day trial now, in day 3 tomorrow...

sprite, your doctor can probably get some free samples for you. Also, talk with the doctor, pharmacist, and/or the insurance broker about how to convince Blue Shield to cover the med. I saw something on another forum where coverage was initially denied, but the caregiver petitioned their insurance company, and by using information about the clinical trial data, was successful.

I am going to see if we can get Axona in Mexico for cheaper.
We live 5 miles from Mexico and I have a coworker checking Axona in TJ for us.
I am buying the 30 days this weekend at target for my mom.

It is working wonders for my Mom and I want to start a vanilla forum, but I will do a blog instead soon...

I just wanted to let you know that I have started giving 1/2 tablespoon of coconut oil and 1/2 tablespoon of MCT oil. I noticed the last few days she has had some confusion. but she also just underwent anesthesia for a colonoscopy but I don't know what the cause is for the recent confusion and less cognitive abilities. I will keep her on this for a week and if there's no improvement then I will go back to more coconut oil. I'm still waiting for my supervisor to approve monthly payments for the AXONA.

Hi, everybody! After reading your posts and your experience with alternative treatments, like coconut oil and cinnamon, I decided to try the oil with my mom. In my country I couldn't find (so far) the cocout oil itself, but I found the MCT oil, which seemed to me the most important part ( of coconut oil).
I've been reading about metabolism in brain cells of people with Alzheimer's, and I am convinced that the MCT oil has a strong scientific basis (it's not just an impression, or a concidence). It probably really works, and there are scientific reasons for that (I know that you all probably know it, but I am saying that for someone that may not know yet).
About my mother, she's been using the MCT oil for about 10 to 15 days, and everybody noticed some good change. She has improved her speech, and understanding about a couple of things. She is exercising as she used before (and her teacher said she is better).But, no miracle at all... unfortunately. We are giving her 30 ml a day. I am going to monitor her lypids, because she has a genetic dislypidemia. Anyway, if we get any improvement, I'll tell you. Thank you for the support.

We started out in December using Twinlab's "MCT Fuel", 2 Tbsp, 3x per day plus 1 Tbsp of coconut oil 1x per day. We saw good results. But, when the price of MCT fuel jumped up, we thought we could get by on 2 Tbsp coconut oil per day alone. It didn't work so well.

Last week, we changed to using MCT oil (the brand we use is Now Foods), 2 tsp, 3x per day plus 1 Tbsp of coconut oil before breakfast and again before going to bed. We seem to be on the right track again. Dr. Newport, on her web site, gives her regimen she is using for her husband. We used that as a guide.

I think it is best to experiment with dosage and timing to find what works the best. Some people have digestive problems with these oils. Some people are seeing positive results from as little as 1 tsp of coconut oil per day! Some people have reported good result from uing coconut macaroons! (f.y.i. the brand they are using is "Jenny's" from health food stores.)

Hi, Ahllycia. The studies with Axona showed that patients who carry the APOE4 allele are helped by ketogenic oils, but not as much as those who don't carry this allele. Henderson's publications have a number of hypotheses as to why this might be.

But with any patient, it is likely that there will be gradual changes over a period of months -- the ketone bodies gradually change the expression of quite a few different genes. So hang in there ... and please let us know how your mom (and you!) are doing.

I've been giving my lady 1/2 tablespoon of coconut oil and 1/2 tablespoon of MCT oil mixed in with her meals at breakfast, lunch, and dinner. I haven't been giving it to her at night so I may try to give it to her at bedtime. I will also try giving it to her at breakfast before she eats. Maybe it's being eliminated too fast, with the MCT oil mixed in, before her body has a chance to absorb it, or maybe the food is interfering with it some way.

It may be that the straight coconut oil works best for her. I'll give the MCT oil a chance to work though before I change the dose.

I would think that a week would be enough to see if the dosage is better or worse. I'll just have to try to change things until I see her improving again.

She was doing so well until about 2 weeks ago. There may be other factors involved such as the anesthesia. We also had decreased her Celexa from 10mg to 5mg because she didn't seem to need it anymore. This may also be a factor too because she has been crying over another client that I had for a short period of time and was upset that she had to go back home to her mother. It is so hard to pinpoint the nature of her problems at times because of the Down Syndrome. When they are sick or grieving or depressed, it will many times manifest itself as behavior problems or confusion.

I'll let you know how it works out. I'm glad that everyone is seeing improvements with their loved ones with this whether it is small or large, or just maintaining. This is just a horrible disease and can be so depressing for everyone involved at times. The HBO special really brings that to the forefront. After watching this series, I'm inclined to agree with you that this disease may need to be fought on different levels using meds or treatments for each condition.

I wish with all my heart that they would find a cure or at least a treatment. They say that this is the disease feared most after cancer, but to be honest with you, if I had a choice, I would choose to have cancer because then I would at least have a chance to be cured.

Sorry I haven't updated for a while. Just wanted to let you know, that instead of changing the CO or MCT oil, I increased her Celexa back to 10 mg. This has helped her depressive symptoms immensely and I'm inclined to think that the sudden stop of improvement was due to my lady's depression over the other client leaving to go back home. She has returned to the improved state she was in before this happened. Her improvement has slowed but I see more improvement each day. It isn't as fast as before, but it takes about 3 weeks for the higher dose of Celexa to fully enter her system. I'm going to try to increase her combined intake of CO and MCT oil to 4 tablespoons a day, to see if it will speed up her progress.

I have to do this slowly, because she has a problem with diarrhea. The 1 Immodium in the morning and the heaping tablespoon of Metamucil in the evening, and 8 oz of V8 juice a day, and a container of yogurt, has helped tremendously with this problem, so much so that she hasn't had any diarrhea at all since we started this regimen. She also has regular bowel movements each morning that are normal. I never thought I would ever see this. The doctor who did her hemorrhoids said that her problems stemmed from not enough fiber and he was right. He said bowel movements should be big and fluffy, and fiber is what gives this. You have to give the Metamucil a couple of weeks to start working correctly. If anyone's LO has a problem with the diarrhea caused by the CO or MCT oil, you may be able to help them by giving them the above items. I always thought I provided a well balanced diet and never thought about fiber until talking to the doctor. I started reading lables about fiber and you know, it's hard to get all the fiber you need in a day. She is a small person so if your loved one is bigger they may need two doses of Metamucil a day or more of the other items.

I increased her CO to 1/2 tablespoon plus 1/4 teaspoon and increased her MCT oil to 1/2 tablespoon plus 1/4 teaspoon with each meal on Sunday. I haven't seen any problems with diarrhea so I'll increase both of them to 1/2 tablespoon plus 1/2 teaspoon each with each meal, after a few more days just to make sure she can accommendate the higher dose.

I have seen more improvement with her cognitive skills since Sunday. I'll let you know how she does with the higher dose after we implement it. I hope more of her speech improves. She is remembering more words but she still has problems trying to get her words out when she is talking about some things. It's hard to explain because some things are easy for her to talk about, but when she is trying to tell me something about another person she is getting it all garbled.

Just wanted to let you know that I have also been posting these messages at Mary Newport's blog site. She is now blogging and you can leave comments at her blog. Here's the address:

http://coconutketones.blogspot.com/

I had increased her dosage to 1/2 tablespoon plus 1/2 teasppon of mct oil and 1/2 tablespoon plus 1/2 teaspoon of Coconut oil with each meal with no problems with diarrhea so far. I have seen more improvement, with more words and recognizing some people by name and it's only been 2 days. I am definetly going to start the cinnamon and curcumin because I have read about some great results from these. I'm only waiting because I want to make sure of any results, good or bad from each supplement. I want to start them one at a time, but I don't want to wait too long either, because I'm afraid that I may be keeping a potentially helpful thing from helping her. So I'm trying to up the co/mct oil up as quickly as I can without any side effects.

Today, I mixed 1 cup of mct oil with 3/4 cup of CO in a jar. I will continue with the 1 tablespoon and 1/2 teaspoon for a few more days and then try to increase the dosage. I'm incrementing the dosage by 1/4 teaspoons at a time, because she has always had problems with diarrhea and her body needs to get use to the increases slowly. I increased the MCT oil by a ratio of 4 to 3 over the CO to see if this will bring better results.

The good results we had from cinnamon started to appear about 4 weeks after starting. Small improvements continued for until about 4 months after starting. After that, a plateau. But, we considered this a success (better than decline). I attributed it to the cinnamon clearing out the tau protein aggregations that were already present. But this would not address an underlying cause, whatever that is. If the glucose hypometabolism is a much earlier step in the disease process, a step well before the tau protein problem, then it makes sense that using both MCT oils and cinnamon (or one of the other tau protein corruption fighters) would have a synergistic effect until existing tau protein aggregations were lowered as much as they could be. Just my thoughts. No proof.

swarfmaker, I started giving the cinnamon to my lady today. I decided not to wait until I can get the dosage increased for the MCT/CO. I figured that since it takes about a month for the results to show for the cinnamon that this would give me plenty of time to see any additional results from the oil.

I have increased the dosage of the MCt/CO to 5 teaspoons at each meal. No diarrhea at all. The last few days I have noticed a decrease in some things. It's like she doesn't understand what I'm asking her to do, but it only is with a few things. But on the other hand she is remembering a few more names and words. She has also been a little more emotional, but only about the things I've asked her to do. The emotion is more of a fake whining crying type of thing. This seems to me to be related more to a behavior type of thing. I don't know. It's hard to read her because of the DS along with the AD.

Amelia99
I am so happy your posted a reply on the caregiver's forum for 40 yo DS AD patient with AD mom. I looked you up by searching with your directions, and found this forum... I never looked on the forum before.

My sister just past away on June 1, but I am so intrigued with your post here regarding the Coconut Oil and MCT (what is that?). My sister could not swallow when she came home end January. After coming home I began adding cinnamon to her thickened liquid for covering up vitamin and med taste for her. After about a month she did try to swallow again for a while. I have no way of knowing how long I continued the cinnamon, thought this to be interesting stuff this thread talks about....

Please give your LO a kiss on the forehead for me. I hope she continues to maintain the healthier results you have achieved. Remember there are many ups and downs in the AD journey. So consistency may waine from time to time.

little sister, I'm so sorry for your loss! I imagine this is hard for you to read. I will give my little one many many kisses all over her face for you. She is precious to all of us and I know that your sister was precious to you too. I hate that these wonderful loving people who have DS get this horrible disease later in life! It just isn't fair. Of course it isn't fair to anyone to get AD.

The coconut oil contains MCT which are Medium Chain Triglycerides. MCT oil is just a concentrated form of the Coconut oil's capryllic acid and capric acid. These are just two of the mct's that are in Coconut oil. These are the ones that they think work the best. MCT oil has been out on the market for years and body builders use it. For more detailed info about this and how we all became aware of it's potential to help go to this website and read Dr. Mary Newports article and some other articles she has about this. She ran across this looking for help for her AD husband and it has produced extreme results for him. The website is:
http://coconutketones.com/

Once again, I'm sorry for your loss and I hope you stay in touch with us on this forum. I will keep posting results as they happen on this thread for my lady.

Dear Amelia99
Thanks for your kind words about my sister's passing. No, I really am not having a hard time with the information presented here. I find it wonderful. Patty might have benefitted if I had known, but I believe she is happy now and out of danger. She put up a great fight, bravely and is my hero.

Data like this is beneficial as so many people might be helped, Down Syndrome or not.... I was amazed when Pat began eating again after a month and we had no idea why. The other posts that mention cinnamon might be the answer to that. She did not get alot, so that is what is interesting; maybe a few dashes in a teaspoonful or two of thickened liquids per day.

If the coconut oil had been known, I certainly would have tried it. This data should be put onto the caregiver's forum more often, as maybe some of the participants there do not check the other forums. I found just that forum alot to keep up with. Also I was not a searcher for alternatives as I only thought medical field had any answers for the AD situation.

My sister was 4' 8 1/2", slightly taller than your lady. What I find cool; I always called my sister baby lady! It was hard not to call her baby, but my whole life I always insisted on making her feel mature, as others treated her childishly... just one of my quirks I guess as her younger sibling. When she was sick the past couple of years I just wanted to scoop her up like a baby, but even at her size that was not possible.

Keep up the good work. What state are you in and I'd be interested in knowing more about the arrangement you have in-home for the program your lady was in with you.

I did the same thing for my mother, and also wondered why her symptoms had been improving.

After she first started having signs of dementia in 2006, I started searching the internet for anything that might help. I came up with a bunch of supplements to try. She would not swallow pills. She just held them in her mouth until the casings dissolved. So, I started mixing up a cocktail of supplements in apple sauce and sometimes added a bit of apple juice. I knew they tasted awful, so I started adding cinnamon to cover up the taste. When her symptoms started to improve, I attributed it to the supplements, not the apple sauce or the cinnamon. I considered this just flavoring. Later, my father found that she would take the stuff just as well without the cinnamon, so I stopped adding it. She started to decline again. I had changed other supplements, so I thought that was what the problem was. I started taking notes of what I gave her and how she reacted. In early 2008 I started giving her lithium orotate. It was an act of desperation. In late April of 2008, while continuing to search for info on lithium, I ran across a blog that mentioned that a researcher at the University of California, Santa Barbara, by the name of Donald Graves had found a substance in cinnamon that not only prevented the corruption of tau proteins, but would actually "untangle fibers already formed"! I knew instantly that this would work, because I had accidently been using it.

At the time, cinnamon was the only substance I had been able to find mention of that had a chance to attack this tau problem. Since that time, we have learned first of the old medicine methylene blue, and the variant of vitamin B3 called "niacinamide" or "nicotinamide". Both of these things may also attack the tau protein problem. Lithium may also prevent tau corruption, but it is not known to break down the aggregations already formed. There may be other side effects, so we stopped using the lithium orotate. However, it may be something someone would want to research more.

My experience with the cinnamon has driven home the point that it is good to take note of even seemingly unimportant observations.

There is also something to be said for "doing it right". I was adding cinnamon to my mother's meds, but only an 1/8 tsp or so. It turns out that for her, we really needed to add about 1/2 tsp, and to use it 2 or 3 times per day.

I also found out that diabetics have been using cinnamon for years to improve their blood glucose levels. There are many substances in raw cinnamon, some of which may have no benefit for our purpose, and some which may not be too good to have in large quantities. Dr. Graves mentions in his patent application for "cinnamon proanthocyanidins" a process for extracting them, and leaving the other substances behind. Diabetics have been making a "tea". I used their recipe for that. It corresponds well to Dr. Graves' procedure, so I'm hoping that it concentrates the useful chemicals from cinnamon.

Or you can be lazy like me and buy the already-purified extract:

http://www.naturamart.com/meta...act-60-capsules.html


http://www.nextag.com/New-Chap...26520516/prices-html

little sister, I live in WV and the Specialized Family Care program is through the DHHR. I've done this for over 26 years. The people are placed in your home by DHHR after you have been thoroughly investigated, fingerprinted, background checks etc. The purpose of the programs is to place people in a family oriented setting. So only 3 people are ever placed in a home at one time. They become part of your family and this is as close as you can get to the real thing. Most of our people stay with us for the rest of their lives and they are totally part of our families. The only part I don't like is the endless paperwork, rules and regulations.

I wanted to let you know that I increased the CO/MCT oil 3 days ago. I mix 1 cup of Ultimate Nutrition MCT Gold oil with 3/4 cup of Louanna coconut oil together in a glass jar. I then give her 2 tablespoons of this mixture in her food at breakfast, lunch and dinner. I tried the Extra Virgin coconut oil but didn't see any difference, so I went back to the LouAnna brand because it can be mixed with many more foods.

She only had a few bouts of diarrhea the first day when I increased it to 2 tablespoons, but I gave her another Immodium that day and it stopped it. She has a problem with diarrhea so I increased the oil slowly over the past 4 months so as to give her body more time to adjust to it. Before I even started the oils, in order to curb the diarrhea, I had been giving her 1 Immodium in the morning, 1 heaping tablespoon of Metamucil at around 7:30 pm, and 8oz. of V8 Juice with Extra Fiber daily, and a container of yogurt that contains the most bacteria cultures. This has helped her tremendously and I think this is why she has tolerated the oils so well from the beginning. I can't stress the fact that she has always been plagued with diarrhea so it's a miracle that she can tolerate the oils at all.

I also try to give her at least 2 servings of vegtables and fruit a day. I have just started giving her applesauce every day because swarfmaker recommended it on another thread. I think it contains some of the good ingredients that cinnamon contains or something similar to what's in the cinnamon. The oil mixes very well with applesauce or yogurt if you have food that's difficult to mix the oils in.

She has improved with using more words, (except the ones I really want her to remember). I noticed that she has started to remember a person's name from Day Treatment Program who has been working with her lately. This person is a new staff person who didn't start until after the AD had set in. So this isn't remembering but learning someone new. I'm very happy with this developement! It proves that she can learn new things. She has also learned a few things in the past month that are new to her and not remembering how to do something from before. Even though it seems the improvement has slowed down considerably, there are still small improvements even if it's just a new word and that is better than losing a word.

As I read over my previous post I realized that my lady has improved with some other things such as clearing her dishes off of the table and bringing them into the kitchen and doing this with no prompting. Like I said before, it's small things but they are improvements. I think that maybe I'm expecting too much too soon. I just need to be more patient. The AD took a while to start doing damage, so it's only logical that any treatment will take a while too.

One other thing I just discovered. I couldn't understand why last week, she suddenly wouldn't pull up her own depends after using the bathroom. She would just stand there and wait for me to do it. She had been doing really well before this on her own. I automatically thought that the oils had quit working and she was getting worse. A very depressing thought!

After just now talking to the person who works with her at the Day program, she told me that she has my lady hold on to the support bar next to the toilet and she pulls her Depends up because she is afraid that my lady will fall on her head because she bends over so far to do this. I told her that my lady always has bent over like this whenever she does anything like this or picks something up off of the floor etc. This is a new learned behavior although it is not one that I want her to learn. It also explains why she did better with doing it herself over the weekend and then after a couple of days at school, she reverted back to me doing it.

I realize that my lady also has Down Syndrome which makes things more complicated, but I truly believe in making your LO do as much as possible for themselves. Maybe if you feel that your LO isn't making the progress you think they should, it may be that like me, you are overlooking the small things. I am really going to make an effort to "see" and "hear" everything she does, and write it down. I have to write it down because I can't remember very well at times. I told my lady that I'll have to start taking her medicine too so I can remember things. Her response was "Oh, shut up!" and "I'm gonna get you!" as she chased me around the table.

There's something that I should also mention after reading about it on another thread. I need to stress to everyone reading this thread that I have not given my lady anything, and that means anything, that I haven't first discussed with her doctor and had the pharmacist double check against all the medications that she is taking. I also have incremented everything slowly and let her body adjust to it. I want to help her but I don't want to cause any injury in my trying to help her through my ignorance or haste to see results. Before you do anything, you should always talk to you doctor first and then your pharmacist.

This evening at supper, I thought that I would try to give her 2 Tablespoons of just the MCT oil to see if it made any difference. I thought since she had tolerated the 2 tbls. of CO/MCT oil so far that she wouldn't have a problem with it. Big Mistake! She complained of her stomach hurting and then had a bout of diarrhea. Afterwards she was fine, but I won't do that again! I will stick to the regimen we have been on. Evidently, she would have to build up a tolerance to just using MCT oil by itself, if we would cut the CO out. I thought the MCT oil would be more tolerable than the CO. Of course the CO might do the same thing if I tried to give her just that without the MCT.

I imagine that she would have to build up a tolerance to Axona because I think it would affect her the same way as the MCT oil since it contains higher doses of the C8 and C10 like the MCT does.

Wanted to let you know that I'm switching from the Walmart LouAnna brand of CO because I've discovered that it is Refined even though it's Non-Hydrogenated, 0 Trans fat. Refining in the CO industry means it has been refined, bleached and deodorized. I don't know how it was refined, but I don't want any changes to the actual CO by any means in case it destroys or changes the MCT's in it.

I ordered the Nutiva Organic EVCO and will use that. I just picked that brand over others because it was the most for your money. 54 ounce jar for $22.48 which includes shipping, thru amazon.com.

I also ordered a bottle of the NOW MCT oil instead of the Ultimate Nutrition MCT Gold oil. Price was about the same but Now has 55% Caprylic and 45% Capric. Ultimate Nutrition has 67% caprylic and 33% Capric. This is a fairly big difference in the amounts, but I can't find which of these ingredients is the major ingredient in Axona. Axona states that it is made of >95% Caprylic Triglyceride which is a combination of both, but I can't find the amounts of each that is in it. So I thought that I would try to use the Now brand and see if it makes any difference. swarfmaker and Dr. Newport use this brand and have reported good results with it. The ultimate gold has shown much improvement with my lady, but I thought that I would try this also and see if there is more, less or no improvement.

Forgot to report that I'm seeing more and more words and sentences coming back. Also seeing better cognitive thinking. Energy level is still very high, but she doesn't have any problems sleeping at night. Very slight improvement with some short term memory items such as days of week. She also has the ability to learn new things. I don't know if this is the normal thing for AD but she is still capable of learning actual new simple things. She's showing more ability to follow and understand conversations around her.

I believe that I'm seeing improvements due not only to the CO/MCT oil but also to the cinnamon, even though it has been only 2 weeks since starting it. I've been checking her glucose and urine, and it is very good. Glucose has been between 84 and 90 and the urine has been clear of ketones at the 1 hour and 2 hour intervals after eating. I have a glucose monitor and I bought some ketone strips at Walmart to monitor her urine output. I know that her glucose is very good and I'm assuming that it is a good thing that she doesn't have any ketones in her urine after eating. I hope this means that they are going straight to her brain where they belong.

I can't say what these figures would have been before starting any of this because I didn't check them. Her labs never showed any problems with glucose before, but she never had the insulin resistance testing either. My husband just discovered that he is insulin resistant but his labs didn't show it either until he had the insulin resistance testing. His problems showed up after the 2 hour interval glucose was 225 and urine showed ketones and then he would experience a sudden drop of glucose. He was experiencing hypoglycemia symptoms but we didn't know it was due to hypoglycemia, because we weren't aware that he had any glucose problems. His glucose is being held in check now with changes to his diet. He is a risk factor for AD because his mother was diabetic and also had AD.

I just put in an order for the Ultimate Nutrition MCT Gold! I seem to recall that it is the caprylic acid that we want, the most, but the others should work too. I ordered the Now Foods MCT oil before I knew the difference.

Perhaps someone could clarify, but I think that "caprylic triglyceride" means caprylic acid. So, the active ingredient would be the caprylic acid.

amelia99, caprylic triglyceride is what is most "ketogenic" and therefore best for treating your LO. Axona is essentially pure caprylic triglyceride. "MCT" stands for "medium-chain triglyceride", that is, caprylic triglyceride and capric triglyceride. MCT Gold is higher in caprylic triglyceride than NOW (67% vs 55%), which is why it's more expensive. Also, I suspect that NOW just lists an average composition, and is much more likely to vary from batch to batch.

Caprylic triglyceride is hydrolyzed to caprylic acid (1 molecule triglyceride becomes 3 molecules of the fatty acid) in your body.

Do you buy over the web? I've found that All Star Health has good prices, and excellent service.

I'm so glad you're seeing improvements in your lady!!!

I've been ordering from AllStarHealth.com via Amazon.com I've been buying 4 quarts at a time. I think that if you already have ordered the Now Foods brand, it should be OK. However, please let us know if you see a difference. When we run out of the Now Foods MCT oil and start using the Ultimate Nutrition, I'm going to watch for any differences.

jab, I've been using the Ultimate Nutrition MCT Gold since reading about your recommendation on another thread. (Thank you!) I saw from all the brands I researched that it also had the highest caprylic content, at 67%. I also bought it from All Star Health. It was only about $15 for a 33 oz. bottle. This is the only MCT oil that I have used, along with the CO, since starting this in February, and my lady has shown much improvement.

I was researching the Axona ingredients and I mistakenly thought that caprylic trigylceride was a combination of both the Caprylic and Capric. I thought that there may be more of the capric in Axona than the caprylic which was one of my reasons for changing to the Now Brand and along with the improvements reported by swarfmaker and Dr. Newport. No wonder I couldn't find how much of each was in the caprylic trigylceride! This is what I get for not taking notes and just wandering from one article to another. Boy, am I embarrassed! I've researched so much stuff lately that I can't keep anything straight. It just didn't register in my brain. I think I better start using it myself!

Thank you for your kind remarks about my lady! I would love to see "miracle improvements" but I'm very happy with the ones she has made in the last few months. If she stays where she is, then that's okay too because she still knows me and the rest of the family. She is now happy and aware of her self and others, and is very active. She takes much joy in her life and this makes me happy for her. She also brings joy to the people who are around her, even strangers we see at stores, restaurants etc. She makes them smile and laugh and that is good for everyone. These things are more important than if she remembers the day, or to go to the bathroom on her own or to remember all of the time that her shorts don't go on her head. (Although, the bathroom one would make ME deliriously happy.)

swarfmaker, I am ordering more Ultimate Nutrition Premium Gold MCT as soon as I post this. I think I'll stick to it since it has the higher Caprylic trigylceride content. I'm really anxious to see if you have better results using this and I hope you keep us updated on your mother. I think you'll probably see more improvement. I was also wondering if you monitor your mother's glucose while using the cinnamon? I mentioned earlier today in another post above about this and I thought maybe you could input on the results I was getting for my lady. If you do monitor your mother's glucose at home, are you getting the same kind of results? I don't know if they are even relevant for what the cinnamon is doing to help or if it can even be monitored this way. All I know is that my lady's glucose is very good.

I appreciate all the info that you and jab contribute to all of us here, it really makes a difference and is so very helpful, especially to us that can't seem to think straight anymore!

Thanks for the kudos. I would like to thank you and all others who are experimenting and making reports about what you are doing and what results you are seeing. I choose to believe that this bits and pieces of information will be useful.

This is a post I had at the "Cinnamon Really Works" thread that I think I should also post here because it's relevant to what I'm doing here which is posting any results for my lady.

swarfmaker, I don't know if you can check glucose accurately without the meter. I don't think the urine test strips are as accurate, but you could use them. This used to be the only way diabetics could test their glucose at home. I don't know if you need a RX for these test strips. You could always ask your doctor if he might have a glucose meter. Many of the companies that make them will give the doctors free ones to pass out to patients. He would have to write a RX for the strips that go in it, but they are covered under most insurances. I may be wrong but I don't think that Medicare or Medcaid will pay for the injection needles that go in it. I believe they are no more than $10. A lot of time, Kroger or someplace like that will run ads in the paper to give out free machines and you just have to bring in a RX for the strips.

I just happened to have one here and thought that I would use it to keep an eye on her glucose. The Ketone urine testing strips you can buy OTC in the diabetic section at walmart etc. You could use these strips to check her urine to see if she has ketones in it. I believe the Dr said that the ketone urine strips should be negative at all times after eating. If the strips show a result than I believe that means they are burning too much fat and dumping ketones out and their body's insulin isn't working correctly.

My lady isn't a diabetic either but none of us know if they have an insulin resistence either unless they are tested for it. My husband didn't know it either until he was tested. His fasting blood glucose tests were always less than 100, so there were no flags other than his symptoms, which have occured sporadically over the last few years. We just didn't know what was causing them. He had an MRI of his brain, the carotid artery ultrasound, echo, cardiac stress tests, you name it, he had it. They were all negative so we thought it may be stress, or not sleeping enough, diet, glasses etc. All this time it was due to insulin resistance and the hypoglycemia it caused.

This is what puzzles me, if our LO is taking all this MCT/CO or Axona, shouldn't we be seeing at least some ketones in the urine? I haven't detected any in my lady's but I don't test every day. Just a few times a week. I also only test at the 1 and 2 hour period after eating her meals which is when she eats her oil and cinnamon. Maybe 2 hours is too soon to see if the ketones are in her urine, or maybe all the ketones are being used up. (I hope by the brain). They say that ketones are a by product of burning fat, so wouldn't we see them in the urine after consuming so much oil no matter when we checked? I didn't begin to test her until after she had been taking the cinnamon for about a week and a half so maybe it could be due to that. I know cinnamon regulates glucose, do you think it could also be doing something for the ketones as well and that's why I'm not seeing any ketones in the urine? Tomorrow I'll check the urine at different times than 1 or 2 hours after eating to see what the results are and I'll let you know if they show up later than 2 hours after consuming the oils. The other line of thought I had may be that the cinnamon is regulating the glucose and the insulin is working properly, which means the fat is burning at a rate that is producing the right amount of ketones which is why I'm not seeing any being dumped in her urine. She is taking 6 Tablespoons a day of the MCT/CO, which is quite a bit and she is a small person. It just perplexed me that I haven't seen any ketones yet in her urine. I was expecting to see at least some small amounts.

I may be just trying to over analyze this and it means nothing.
I would appreciate any thoughts or information you or anyone else may have on this.

(I'm also going to post this in the Down Syndrome/Coconut Oil thread.)

Something else I should mention, last September, my lady had an episode where she became irritable, then sweaty, and clammy, and then weak and dizzy. I took her to the ER and as we were walking in she started to act as if she were going to faint. She bent over so far that I had to hold her up and get help from a security guard to get her in the ER. She was admitted and was in there for 3 days. Her blood pressure was 72/25. Her blood pressure usually runs 90/60. They started giving her glucose and she returned to normal in just a little while. They tested her for everything in those 3 days. They never found out what caused it. This episode she had happened about an hour or so after she ate breakfast.

She had similar episodes, only not as severe, in the months of Oct. to Feb. One doctor said it could be to the Aricept, another the Celexa, another said dehydration which I knew it couldn't be because she drinks constantly. She has been on Aricept almost 2 years with no problems. This wasn't a side effect of Celexa either.

I remember about a year and a half ago, I had to get my lady from school because they said she was sick, and it was similar symptoms but not nearly as severe as last Sept. I took her straight to the doctor and her blood pressure was 70/40 but no fever etc. He thought she was getting the flu and may be a little dehydrated so he prescribed some meds and fluids. After she drank some gatorade she was fine.

I think she was experiencing hypoglycemia because the symptoms match. It would just happen out of the blue, one minute she would be fine and then the next it would hit. Sweaty, clammy, weak etc. and this would caue her blood pressure to drop which would cause the weakness, and faintness, and she would have to sit down or lie down. After a short while she would be fine.

This all started when the traumas I mentioned in my first post, hit her and the AD went from very mild to moderate or more virtually over the course of just a few weeks. The trauma kicked the AD into overdrive and I think along with it, the glucose went haywire.

Since she started the Coconut oil in Feb. she hasn't had another episode since. I don't know why that is unless it can be attributed to the ketones getting to the brain in place of the glucose. I have no idea except she hasn't had an episode since starting the CO. No other meds have been discontinued.

Until a few months ago, I didn't know very much about AD and that limited glucose and insulin resistance was a factor in it. The doctors didn't know it either or they would have recognized the symptoms knowing that she had AD. I have learned so much in just the last few months that now in hindsight, I believe she may have been experiencing insulin resistance or something similar to that effect as in her glucose being out of whack, and it was causing hypoglycemia. I really don't know for sure, but I would bet some money on it now. I don't know if it was a cause or effect of the AD but it is plain to me now, that it was something to do with the glucose and insulin. I will have the Dr. do the insulin resistance test on her when she goes later this month.

Since there haven't been any symptoms since starting the CO/Mct oil and now the cinnamon, I don't think it will show up. Her glucose is testing very good now, but I wasn't testing it when all this was going on. She had regular blood glucose tests but now I know they don't show the insulin resistance problem.

This is all just my opinion and my observations. It really didn't hit me until tonight about all of this happening in the past. I also apologize if it is a little confusing, but it is really late and I'm getting sleepy.

Another observation is that my lady has not had a cold, flu or anything at all since starting the CO/MCT regiman. She used to get a cold every 1 or 2 months. This was due to the fact that she is a very social person and is a very affectionate person. She would run up to people hug and kiss them before you could even take 2 steps to stop her. She also goes to a Day Treatment Program (which is like school) and is exposed to many people there almost daily.

Nothing has changed except that she may be more affectionate and social than ever before.

Just wanted to let you know and to see if anyone else has noticed a side effect of the CO/MCT like this.

I'm researching the ketone articles still but I wanted to post some results from the glucose/ketones testing I've done today.

Fasting before breakfast - Glucose 88 Ketone strip - Negative

1 hour after breakfast (which contained 12.5 Carbohydrates) - Glucose 82 Ketone strip - Negative

2 hours after breakfast - Glucose 85 Ketone strip - Negative

3.25 hours after breakfast - Ketone strip - Negative. I didn't test the glucose because there was no point in it and I didn't want to stick her finger again for nothing new.

Medications before breakfast - 1 Immodium, Synthroid, Celexa, Namenda.

Medications during breakfast (more towards the end) - Multivitamin and 500mg of Cinnamon.

2 tablespoons of Mct/Co was mixed into her eggs.

I don't know how much more regulated her glucose could be by using these numbers. They are so consistant that I don't know if I should be worried about them or not.

It is surprising to me that her fasting glucose was 88, and is actually higher than the glucose numbers of 83 and 85, which registered after eating - but also after taking the cinnamon. These numbers should have been higher.

I guess I'll add this to my search lists which seem to be growing every day.

I wish that I would have done this glusose/ketone testing before I started the CO/MCT oil and the cinnamon. I didn't know much about glucose and AD until in the past few months, so I have no idea if any of these numbers would be different. I only have my suspicions.

The only other factor that I can attribute to the theory that these numbers would have been different is that she has not had an episode such as I described above in another post, since starting the CO/MCT.

If anyone has any theories or knows about this kind of thing then I would really appreciate your input. Thanks!

I'll also post this at the cinnamon thread.

Wanted to add that I give her 500mg of cinnamon in the morning during or right after breakfast and then 500 mg of cinnamon at bedtime. These are just the cassia cinnamon capsules that you can buy at Walmart.

I asked Dr. Veech early on about the Ketostix and he said they are "worthless" for the levels of ketones we are concerned with. Also, on the front of the bottle is says that they are measuring the ketone body called acetoacetate, and therefore not beta-hydroxybutyrate, which is produced in larger quantities than acetoacetate from the medium chain triglycerides. They are more useful for a diabetic to monitor for ketones which can become many times (25-50 x) higher than the levels we are hoping for. The ketogenic diet produces levels 2-4 x higher than from eating medium chain triglycerides - it is just a relatively difficult diet to stay on for the long haul.