Ifelt as if I were living in a parallel universe.
When Steve scored so well on the Mini-Mental Status Exam at the Johnnie Byrd Alzheimer’s Institute, I didn’t know if it was owing to the coconut oil, a lot of prayer, or just pure luck. At any rate, I decided to continue the coconut oil each day at breakfast. Before we started the coconut oil, Steve would come into the kitchen every morning in a daze, talking very little, and walking very slowly. Eventually, he would find his way to the table and begin to eat very slowly. I continued to add a little more than two tablespoons of coconut oil to his breakfast every morning, which usually consisted of oatmeal. By the third day, Steve began to come to the kitchen alert, smiling, talkative, and generally happy. He seemed to have very little trouble finding his utensils and a glass of water. He spent a considerable amount of time talking at breakfast, and by the fifth day we looked at each other and agreed that our life had changed.
I was accustomed to Steve having fluctuations, sometimes doing better for several days, and then not so well for several more days. But this was different. He said he felt as if a light had switched on, the fog had lifted, and his life had changed for the better. Early on, the most obvious changes were in his personality and in his ability to carry on a conversation. He had more animation in his face, he began to joke, and throughout the day, he became more talkative and appeared to have more energy. In the beginning, he continued to have tremors when he tried to eat and talk, and his gait still looked a little bit weird when he walked, but overall this was a very dramatic improvement compared with the Steve of just a few days earlier.
STEVE: “It was like a light switch came on and everything came into focus. I felt like I might be able to do something instead of being a ‘GOMER.’* It felt brighter inside of me.”
*GOMER is an acronym for “Get Out of My Emergency Room;” it’s a derogatory term, sometimes used by doctors in training to refer to elderly people with dementia and/or other chronic illnesses.
I told my sister Angela, and also my father and his wife, what had happened with Steve. My sister suggested that I start keeping a journal. I found a composition book and began writing down everything I could remember. Here are some excerpts.
May 21 • DAY 1: I put two tablespoons of coconut oil in oatmeal and whey protein for breakfast, then prepped Steve for MMSE on the way to the Byrd Institute. In the car he could not remember it was spring, or May, but repeated reminders at least ten times. He remembered these things for MMSE about four hours after breakfast, scored 18, and qualified for study.
May 22 • DAY 2: We are using coconut oil for breakfast (two tablespoons) and also some later in day for cooking.
May 26 • DAY 6: I put one tablespoon of coconut oil on the sweet potatoes at dinner and—Steve liked it. I also cooked chicken in coconut oil and also found that it works well in smoothies. Steve has been alert every morning so far. He reported a dream one morning that “we did not have enough money.” [It had been quite some time since he remembered a dream.] The next day he had a memory from second grade, of a girl he had a crush on and his first grade teacher—he told me this when he came out in the morning. On May 26 he went out in the courtyard and cleaned sides of the pool, then vacuumed the guest room and living room. After that, he got distracted and went outside to work on plants and had some confusion about “critters” digging the bulbs out of planters. I saw him do this earlier and reminded him—he still didn’t remember.
May 28 • DAY 8: Steve had another good, alert morning. He had two tablespoons coconut oil with multigrain hot cereal, half of a banana, and one-half scoop of chocolate whey powder. I started adding L-carnitine to his morning and evening meds two days ago. He remembers immediately it is spring and “almost June.” He couldn’t remember the season or month after multiple prompts a week ago today until mid- to late-afternoon—overall seems more appropriate to his age than that of an eighty-plus-year-old.
May 29 • DAY 9: Steve was alert again today. After breakfast he went out to clean filters for the pool pump. He was able to take all lids off without my presence (before I would have to tell him a few times with each lid what to do). He came in and asked if the pump was set up to turn on automatically (not), and he commented that he would not have thought of that before. Overall, he seems “normal” except some trouble finding words and is completing his thoughts better. He put the filters back together except for one inside cap, which he asked me to check out. I called Stepan Company, the supplier of the Neobee 895 fatty acid product used in Accera’s AC-1202 studies. They will send me a quart sample and also e-mailed me a technical bulletin.
May 30 • DAY 10: Steve was alert and frisky today. He cut the grass around the front of house with the small lawn mower.
May 31 • DAY 11: Steve seems “normal”—happy and alert. He went to get the paper, came back quickly, and read part of a magazine. He emptied the dishwasher with a little help and loaded it with help (minimal). He was still very alert in the evening. We are having good conversations, although with some trouble finding all the words.
June 1 • DAY 12: Steve was up and alert early, about 7:45 A.M. We had lots of conversation about things happening, politics (TV on), coconut oil, things he wants to do today. I asked what month it is and he guessed “June?” (Yes!!) He has a good sense of humor and physically looks great with a normal gait.
I wonder if there is a connection between herpes simplex and Alzheimer’s. The last time Steve had a bad run, he also had a fever blister on his lower left lip that had trouble healing. I need to check path of the nerves from the lips to the brain. Could this virus travel in through this path to the amygdala and hippo campus?
June 2 • DAY 13: I woke up at 5 A.M. and wrote a three-page letter about AC-1202, Accera, medium-chain triglyceride oil, and coconut oil. Faxed, mailed, and e-mailed the letter to retired Supreme Court Justice Sandra Day O’Connor, the Alzheimer Study Group (ASG), the Alzheimer Association, Senators Hillary Rodham Clinton and Bill Nelson, and heart surgeon Mehmet Oz, as well as to the CNN newsroom and the Today Show. Steve woke up around 7:30 A.M. and was still doing well. He went to bed around 10 P.M. I received an e-mail response from ASG; they will investigate the research, report to the study group, and then respond to me.
June 3 • DAY 14: Steve woke up early about 7 A.M., awake, alert, and ready to roll! He drew a clock with a huge improvement from the visit two weeks ago at the CNS (Figure 5.1). He got several things done—he vacuumed all the carpets and floors and also cleaned the pool filters.
June 13 • DAY 24: Monkey man! While I was at work, Steve did a complete load of laundry, washer to dryer, folded and put away without prompting! It has been a very long time since he has been able to finish—usually he forgets to move it from washer to dryer. He was alert all day.
Figure 5.1. Clock 2: Two weeks after starting coconut oil.
Despite these dramatic improvements, not everything went smoothly in the beginning.
June 20 • DAY 31: Steve refused to finish his oatmeal with coconut oil this morning. He wanted to eat a chocolate cookie instead. Last evening I had to convince him to at least take MCT straight to get it in him, since he refused the more pleasant coconut ice cream or other food concoctions. After a lot of cajoling, he finally finished it (breakfast). Aarrgh!
June 26 • DAY 37: Steve drew another clock, and this one was even clearer, with the numbers closer to their usual position and fewer of the spoke-like lines that were part of the prior drawing (Figure 5.2). He continues to gradually improve in other ways as well. His tremor became less and less noticeable, and his gait became more normal.
In the meantime, I began to spend almost every waking moment outside work researching ketones, medium-chain fatty acids, coconut oil, and MCT oil.
Figure 5.2. Clock 3: 37 days after starting coconut oil.
While researching ketones, I found an entry on www.Wikipedia.com that mentioned the name of Richard L. Veech, M.D., a metabolic specialist at the National Institutes of Health in Bethesda, Maryland and a world-renowned researcher on ketones. I found contact information for him and references for several articles, including one titled “Review: The Therapeutic Implications of Ketone Bodies,” published in Prostaglandins, Leukotrienes and Essential Fatty Acids (Veech, 2004). In this article, he reviews in detail the science of ketones and how neurons (nerve brain cells) can use ketones instead of glucose as a fuel, particularly in diseases like Alzheimer’s and Parkinson’s in which the neurons are unable to utilize glucose. He also wrote about their use in diabetes and a variety of other diseases and conditions.
I had so many questions for this physician, not only about the use of ketones for someone like my husband, but also about uses in the newborns I care for. I decided to get up the nerve to contact him by phone and wrote down a list of questions I wanted to ask him:
1. Why not coconut oil instead of MCT oil?
2. Why not use some at every meal rather than just a morning bolus? Wouldn’t it be better to try to produce a steady stream of ketone bodies round the clock?
3. Why 20 grams of MCT oil?
4. Would over-the-counter test strips to measure ketones in urine be useful?
5. Are there any studies in newborns regarding the use of ketone bodies from MCT oil to treat problems such as prematurity, hypoglycemia, or birth asphyxia?
In my first phone conversation with Dr. Veech, I did not mention what I was doing with Steve and the coconut oil, but rather asked him my list of questions. He told me about Accera and the Stepan Company (I already knew). He told me he didn’t believe that the levels of ketones produced by MCT oil, whether taken at one meal or throughout the day, would be high enough to have an effect. He said he did not know why MCT oil would work. He explained that it shouldn’t work, because the blood levels of ketones are one-tenth those needed for transport of ketone bodies into brain cells. But I knew that in Steve’s case it did work.
While I knew that Dr. Veech would be skeptical if I told him what had happened with Steve without evidence other than my own impressions to back me up, when asked about using coconut oil to produce ketones, Dr. Veech replied, “Why not?” He also told me about brain-derived neurotrophic factor (BDNF), a substance that can salvage damaged neurons. When asked about over-the-counter test strips for measuring ketones in urine, he responded that they are “worthless.” Apparently, they measure only the ketone known as acetoacetate and not beta-hydroxybutyrate (the primary ketone used by neurons for cellular fuel), which are usually present in roughly equal amounts in the bloodstream. Dr. Veech said it would be better to do blood samples. Regarding why Accera would choose a dose of 20 grams, he suggested that most people should tolerate this amount without diarrhea (a sign that the body can tolerate no more). Dr. Veech also said he believes treatment with ketones could be beneficial to premature newborns and those suffering from hypoglycemia or birth asphyxia, and it should be studied.
During our conversation, I learned that Dr. Veech synthesizes an ester (a chemical compound made up of an alcohol combined with an acid) of the ketone beta-hydroxybutyrate. This particular ketone ester is a compound in which the alcohol is 1,3-butanediol and the acid is the ketone beta-hydroxybutyrate. This ester combination prevents the blood from becoming too acidic after it is ingested. Ketone ester can be produced in a crystalline form or as a concentrated liquid that can readily be diluted with water. It can be taken orally or given intravenously, and once circulating in the blood, it is taken up eagerly by the brain and other organs and used as fuel. The dosage of ketone ester can be easily adjusted to achieve levels comparable to those that occur during starvation or through the classic ketogenic diet used to treat epilepsy.
Dr. Veech described his ketone ester and how he received initial funding to develop the ketone from the Defense Advanced Research Projects Agency (DARPA). That research and development arm of the U.S. Department of Defense wanted to know whether this “superfuel” might improve the cognitive and physical performance of troops in combat. Dr. Veech had also received some funding from a Parkinson’s foundation, but he was very frustrated because he needed an additional $15 million for a larger facility to produce the ketone ester by the ton to test on people with Alzheimer’s and Parkinson’s diseases. His work was overlooked by the NIH when they were doling out their research dollars. He suggested this might be due to his lack of political savvy and their lack of understanding about the profound potential of ketones to treat disease. He was even more frustrated knowing that other Alzheimer research projects received $75 million, and he was certain, not only as a medical doctor but also as a biochemist, that they would not make a difference with Alzheimer’s disease. He e-mailed me two of his articles on the therapeutic uses of ketones.
Fourteen days after Steve had his first “dose” of coconut oil, and much to my amazement and delight had drawn the vastly improved clock in Figure 5.1, I decided it was time to tell Dr. Veech. I told him what I had been doing with the coconut oil and about the clocks Steve had drawn. He suggested that I fax the clocks to him. When he called me back, he said the difference was truly amazing and expressed once again that he didn’t think the low levels one could get from coconut oil should be enough to make such a difference.
When Steve drew another clock thirty-seven days after starting the coconut oil (Figure 5.2) that was even clearer, I faxed the new drawing to Dr. Veech as well.
Throughout this time, I continued to read everything I could find about ketones, medium-chain fatty acids, coconut oil, and MCT oil. Dr. Veech continued to e-mail some of the important papers on the subject, and he put me in touch with several of his colleagues who were also involved in ketone research: George Cahill, M.D., Theodore VanItallie, M.D., and Sami Hashim, M.D. (I will discuss more about each of these men and their very important work in Part 2.) I read their papers and took opportunities to pick their brains with my many questions. Dr. Hashim told me that he and Dr. Veech disagreed about how high the levels of ketones would need to be to improve cognitive performance in someone with Alzheimer’s. Dr. Hashim believed lower levels would suffice.