Shortly after my article “What If There Was a Cure for Alzheimer’s and No One Knew?” began to circulate, I started to receive telephone calls and e-mails from people who wanted to learn if this could help their loved one and, if so, how to go about incorporating this dietary intervention into their everyday diet. Since many people have the same questions, I put together a set of dietary guidelines that have been revised several times. The short version is available on the website www.coconutketones.com. Here, in Part Three, is an overview on how to make the transition to a healthy diet that includes coconut oil and other foods rich in medium-chain fatty acids, as well as answers to some of the many questions I have received. Patience, persistence, and consistency are key to making this intervention work.
When I bought my first jar of coconut oil, I wondered exactly how we would use this relatively hard, white “stuff” in our diet. At the same time, I picked up a pamphlet on coconut oil to learn the basics and found out that it melts at 76°F. So the first time we used it, I mixed a little over two tablespoons into oatmeal and saw that it readily turned to a clear liquid as soon as it touched the hot cereal. We continued to use coconut oil for breakfast in oatmeal for several months, until Steve advised me that he was tired of oatmeal! In the meantime, we learned that there were many other ways to use coconut oil and were already taking advantage of those ideas at other meals.
I know of many people who take coconut oil straight out of the jar on a spoon, and while convenient, this could get old in short order, particularly if the oil is taken several times a day. It is relatively tasteless and melts in your mouth, so most people find it is not hard to swallow. On the other hand, since it is a food, it seems logical to try to incorporate it into the diet by substituting it for other fats and oils.
During the first couple of weeks that we used coconut oil, I found a number of good recipes online at some of the coconut oil vendor sites, which also contain considerable information about coconut oil in general. I also researched coconut oil cookbooks and ordered several. My favorite cookbook is written by Bruce Fife, N.D., Coconut Lovers Cookbook (2008), which contains the basics about cooking with coconut oil and a multitude of wonderful ideas and recipes for using coconut oil and other coconut products in drinks, salads, salad dressings, sauces and gravies, soups, breads, cakes, and other desserts, as well as complete Asian and traditional American meals. In many cases, it is simply a matter of using coconut oil instead of other oils, butter, or margarine in a recipe.
One of the interesting features of coconut oil is that it tends to enhance the flavor of many different foods. We no longer find it necessary, for example, to drown sweet potatoes in brown sugar and butter, using one or two teaspoons of coconut oil instead, with very nice results. We eat salmon once or twice a week and coat the filet with a tablespoon of coconut oil, and the salmon comes out moist and flavorful every time. Our younger daughter, Joanna, made a chocolate birthday cake with chocolate genache icing for Steve and me (our birthdays are a week apart), substituting coconut oil for the other fats in the batter and icing. She did not tell our older daughter, Julie, who was not yet sold on the idea of using it herself. After eating a large piece, Julie remarked that she could eat that cake for “breakfast, lunch, and dinner.” That was one of the best cakes I have ever eaten. (See for yourself with the recipe on page 360.)
After more than three years of using coconut oil, it has become a staple in our diet, as normal for us now as using olive oil and butter in the past. We still use olive oil and butter, just not as often.
A common problem that people encounter with coconut oil is intestinal upset. We were fortunate that Steve did not experience this problem, considering that we started with more than two tablespoons at one meal. I do not have a gall bladder, so I had some indigestion the first few times I ate the oil, but this problem disappeared after several days. Some people have diarrhea after taking just one teaspoon of coconut oil, and it can be rather urgent and explosive, usually happening within one or two hours of consuming the oil. I advise people to begin very slowly and start on a day when they are not planning to leave the house for several hours, to spare possible embarrassment. As the oil is increased, there is a level at which this will happen for nearly everyone. Some measures can be taken to reduce the likelihood of diarrhea, and I will address this in Chapter 24.
I hear from some people who are very discouraged because they do not see improvement in their loved one with Alzheimer’s soon after starting this dietary intervention. There are a number of reasons why this might happen.
People with Alzheimer’s, and perhaps other less common forms of dementia as well as other types of neurodegenerative diseases, have a problem of insulin resistance in neurons that prevents glucose transport into the cells. Since glucose is the primary fuel for cells, if there is no such fuel available or a very limited supply, the cells malfunction and will eventually die. There is evidence that this process has been occurring in the brain for many years, perhaps even decades, before there are obvious symptoms. Some people with a certain genetic make-up could have a problem from infancy.
Given how long it takes for the Alzheimer’s process to affect the brain, it could likewise take considerable time to undo its effects with medication or diet. When there is already extensive damage, the neurons and pathways of neurons in the brain that are already dead can’t be resurrected. Neurons that are not functioning normally due to lack of energy related to insulin resistance are likely candidates to improve. These neurons may also be depleted of other substances needed to produce the final energy molecule ATP (adenosine triphosphate). In this case, providing the other missing substance(s) may result in improved functioning of such neurons (discussed later in chapter).
Another issue is that many people with Alzheimer’s do not have pure Alzheimer’s disease. In fact, most people with late-onset dementia have a mixture of vascular and Alzheimer’s type abnormalities, and some also have Lewy bodies, which are abnormal accumulations of proteins inside the neuron, more often associated with Parkinson’s disease and Lewy body dementia.
Vascular abnormalities are those related to problems with blood vessels, such as inflammation and blood clots. Some defects are so small they can only be seen with a microscope and may result in minimal loss of brain cells. At the other extreme, some defects can involve a very large stroke with widespread shrinkage of the brain. Memory issues can also occur as a result of conditions including, but not limited to, hypothyroidism, sleep apnea, head injury, brain tumor, vitamin B12 deficiency, lead or mercury toxicity (or other heavy metals), low pressure hydrocephalus, depression (although depression can be a symptom of Alzheimer’s), and they can even be a side effect of certain medications, such as lipid-lowering statins. Since these processes are not one of insulin resistance or decreased uptake of glucose into the brain, the affected cells are not likely to respond directly to the addition of medium-chain fatty acids in the diet.
Keep in mind too that the role of ketones in the brain is very complex and appears to be more than just fuel for cells. It is possible that ketones may encourage growth of new neurons and connections between neurons by increasing certain proteins in the brain that promote this growth. Considering that the brain as a whole is made up of trillions of neurons, the process of repair could take considerable time. In other conditions, where diet has been used to treat or reverse disease, such as in autism, the process may take several years or longer. In the Van Hove study discussed in Chapter 19, which used the sodium form of ketones for children with the rare enzyme defect multiple acyl-CoA dehydrogenase deficiency (MADD), it took many months for the symptoms to reverse.
The age of the person with Alzheimer’s and the extent and location of the existing damage could certainly play a role in the speed and amount of improvement. Some people expect an overnight miracle reversal of this disease process, but this has to be put into perspective. Improvement is relative. Steve is young compared to the average person with dementia, and the process in early onset may include factors that may or may not be present in late onset disease. That may account for why Steve had a dramatic improvement on the first day, with an increase in his score on the MMSE from 14 the prior day to 18 out of 30 points, but this is far from the normal score of 30. During the first two weeks of taking coconut oil, his clock drawing also improved remarkably from an amorphous entity to something one would recognize as a clock. But, still, the average person without dementia would be able to draw a considerably better clock and be able to position the hands to indicate the time, which Steve was unable to master. Steve continued to have other improvements very gradually over the course of many months. Some did not become obvious until we realized that he had not experienced a particular symptom for a period of time.
Some people improve rather slowly; over two to three months the changes may become more apparent, or perhaps you will see that things are not worse. So the strategy of adding coconut oil to the diet may be worthwhile continuing even if results are not obvious in the beginning. At some point, if you are thinking of giving up, you might consider the possibility that this strategy could at least stabilize or slow down the process for your loved one.
Remember that the improvements in the Accera studies were documented using a test of cognition, the ADAS-COG. But as I have learned from a number of people who have reported a positive response in their loved ones, many of the improvements are of the type that cannot be measured on a standardized test, such as increase in energy, interaction with others, recognition of people they had forgotten, return of the personality and sense of humor, and resumption of activities that appeared to be lost. Such things are difficult to quantify but certainly represent important and welcome changes for the person with the disease and their loved ones.
Hopefully, we will be able to learn why some people improve more rapidly than others and why others do not improve at all. After attending the American College of Nutrition Conference in October 2009, I have additional insight about why this happens. It could be that the cells are so depleted of the various substances they need to make energy within the mitochondria that they don’t recover simply by providing ketones.
In a presentation by cardiologist Stephen Sinatra, I learned more about other disease processes that involve a problem with energy production in the mitochondria. When a fuel, such as glucose or ketones, enters the mitochondria, this sets off a chain reaction that involves a number of enzymes and other substances. The end result is the generation of ATP, which is constantly and rapidly created and then broken down to allow the cell to perform its functions. Some of the substances that are required in the chain reaction to make ATP, such as CoQ10, L-carnitine, magnesium, and D-ribose, can become depleted for various reasons, so that less and less ATP is made. If these substances are provided to the cell in the form of food or supplements, it may be possible to increase production of ATP once again. Dr. Sinatra has written a number of books on this subject that explain in detail how these substances are used by cells and how supplementation can help replenish the supply of ATP in the cell. (See Suggested Reading in the Resources section.)
Another issue that can affect how well a person responds to medium-chain fatty acids is consistency of staying with this dietary intervention. The more medium-chain fatty acids are included in the diet, the more ketones will be produced by the liver. After considerable experimentation, we learned that ketones are available in Steve’s circulation for only about three hours after Steve consumes medium-chain triglyceride (MCT) oil and for as long as seven to eight hours after eating coconut oil. This no doubt varies somewhat from person to person. It is unknown how long ketones are available after production for use by neurons and whether they are used immediately or can be stored for later use in the cell. At this point, I am assuming, until proven otherwise, that ketones are used as quickly they become available to the brain.
The brain requires a very high level of energy to operate efficiently. In order to have ketones available all the time to the brain, Steve receives a specific amount of MCT oil and coconut oil with each meal three times a day, at the minimum. We have also incorporated other foods into our diet that contain medium-chain fatty acids, such as goat milk, goat cheese, and other coconut products. (See Table 23.1 for a listing of these foods.)
This dietary intervention probably will not help very much if medium-chain fatty acids are given in a hit-or-miss fashion, such as every few days for a couple of days and then forgotten for two or three more days. Consistency is very important. One can think of it as “fuel in the tank;” if there is no fuel in the tank, the car will not run. It is as simple as that.
In addition, there may be a minimum amount of medium-chain fatty acids that will provide enough energy to the brain to make a difference. Taking one teaspoon a day of coconut oil is a good place to start to avoid certain side effects, such as diarrhea, but that may not be enough to provide the energy needed by the neurons in the brain that are insulin resistant and cannot use glucose. This is why I encourage people to gradually increase to an amount they can handle without diarrhea and to use it at each meal, three times a day. I have heard from caregivers who have tried once-a-day dosing and clearly see an improvement in alertness and other symptoms shortly after taking the oil in the morning, only to see the effect wear off in the afternoon.
For best results, I suggest that medium-chain fatty acids become part of each meal and that they be given consistently every day. It is not unusual in some parts of the world for coconut or coconut oil to be a part of every meal. It is a staple in the diet for many people in the Philippines and in other parts of Asia, Africa, Hawaii, and the Caribbean Islands.
If, after several months of trying this dietary intervention, the caregiver feels there has been no improvement whatsoever and wants to stop, I suggest that it be discontinued slowly and with caution. When certain substances are available to our cells, there is a tendency for the cell to make more of the enzymes needed to use it, a sort of “gearing-up” process. In this way, the body and brain will have a chance to adjust. If your loved one is receiving a significant amount of the oils, I advise decreasing slowly over a week or longer. I have heard from several people who did not realize how much the medium-chain fatty acids were helping until they were discontinued and they saw a nearly immediate decline in their loved one. In this case, do not hesitate to restart the oils, and be prepared that it may take some time to recover.
To help you decide if use of medium-chain fatty acids is effective, it can be very helpful to keep a journal. Shortly after it became obvious that Steve was improving, my sister Angela suggested that I start a journal, and this has been invaluable. About two weeks after Steve’s first dose of coconut oil, as he improved, it occurred to me I might forget what he was like before he started taking it. I wrote several pages describing my observations about his symptoms, not only related to memory and cognition, but also effects on each of his senses, physical symptoms, our interactions with each other, and some of the rather odd things he would do. In the beginning, I made notes every day about how much oil he was taking, how we were using it in food, some interesting recipes, and of course, how he was doing, generally and specifically. (Chapter 5 includes some of these early journal entries.)
I also used the journal to keep track of information related to getting the message out and my questions, the people I talked with about this, thoughts and ideas about Alzheimer’s disease, use of medium-chain fatty acids, and other things I learned along the way that might be helpful to treating this disease. At this point, three years later, I make journal entries about once a week, summarizing how Steve is doing, any changes, and important events.
For people trying this dietary intervention, a journal could be very useful to gauge how the person is responding over a period of time. I suggest that you record at the very least:
• The dates of your entries in the journal
• General and specific observations about the person’s symptoms prior to adding medium-chain fatty acids to the diet
• The starting dose, including how much and how often
• Each increase in dose
• Any side effects, such as diarrhea or indigestion, and anything unusual for that person
• How you are using it, such as cooking with the oil and what foods you are putting it into
• Your observations about changes in the individual for better or worse
At any point in time, you can look back at your journal entries and have a better idea of whether your loved one has improved, seems to be about the same, or has gotten worse. With or without formal testing, this will help you decide whether this intervention is helpful or not.