STEVE NEWPORT – COCONUT OIL CASE STUDY
UPDATE – FEBRUARY 2011
By Mary Newport, M.D.
It has been more than 32 months since Steve improved after taking coconut oil in May 2008. A lot has happened since then and there have been some setbacks and recoveries, but overall Steve has retained most of the improvements we saw during the first months. There was a big improvement in quality of life for both of us and I believe we have gained at least two more relatively good years.
How is Steve doing now?
People often ask how Steve is doing now compared to July 2008. Here is an update:
MRI: Steve had an MRI in June 2008, about three weeks after he began taking coconut oil; 22 months later in April 2010, he had another MRI at the same location and this was reported as “stable” compared to the earlier study. Considering that his MRI had undergone a major change from normal to showing marked atrophy between 2004 and 2008, we were pleased to learn this process has appeared to stabilize.
Here are some of the improvements we have seen, including a comparison between what was reported in my “September 2009 Update” and Steve’s current status as of February 2011:
Reported Sept 2009: His gait has become normal. Feb 2011 - Steve’s gait is still normal.
Sept 2009: He was unable to run for more than a year and can run again. Feb 2011 - Steve can still run; he enjoys taking 20 minute fast walks with me.
Sept 2009: He had a visual disturbance that prevented him from reading. He describes it as the words moving around erratically on the page. This stopped after 3-4 months on the oils. Feb 2011 - this problem has not returned. He does not spend much time reading, however can read accurately out loud, even complex words.
Sept 2009: He has a mild tremor that only appears if he is late getting his oil. Feb 2011 - The same.
Sept 2009: He no longer feels depressed and believes that he has a future. He says he feels like he “got his life back.” His libido also returned shortly after he started the oil. Feb 2011 - Steve’s father passed away in spring 2010 which set off some depression, however his mood is much improved in the past few months.
Sept 2009: He is much less distractible and able to stay with a specific task, such as yard work or vacuuming. Feb 2011 - He is still able to do vacuuming, operate his rider mower, and will spend an hour or longer shredding old medical records for me.
Sept 2009: Family members, who talk to or see Steve every couple of months, report that his conversational skills have improved each time they have contact with him. Feb 2011 - Steve has retained his ability to carry on a conversation pertinent to the ongoing discussion.
Sept 2009: His shoes used to get separated and he would very often wear only one shoe or sock. We used to have piles of the same sided shoes and no match by the doors and in his closet! He would remove one shoe in his garage and they would accumulate there. He is no longer having this problem. Feb 2011 - Steve still keeps his shoes on and keeps them together.
Sept 2009: Within the past 6-8 weeks his memory for recent events is improving. He often brings up events that happened days to weeks earlier and relays telephone conversations with accurate detail. Feb 2011 - He still remembers major events, such as our out of country trips; this is about the same
Sept 2009: He used to spend many hours rearranging his garage, but recently became “bored” and wanted to do something more. He now volunteers twice a week at the hospital where I work, helping in the warehouse with boxes and stickers, and working with someone to deliver supplies around the hospital. Feb 2011 - He volunteered for about a year at the hospital, but became a bit obsessed with wanting to have a paying job. He currently attends a 4 hour social program for people with dementia twice a week, sponsored by Catholic Charities. He is a client but does some shredding and vacuuming for them while he is there. He still doesn’t get a paycheck!
Feb 2011 - Certain features of Steve’s personality became more evident shortly after he started taking coconut oil. Steve’s sense of humor is still very much present and quite unique.
Setbacks and Recovery:
Everything is not always rosy. Steve has had some setbacks along the way and I am quite certain he would not score in the 18-20 range on the MMSE test. Compared to September 2009, in the evening he is sometimes more confused and needs help finding certain rooms in the house. Also, in the evening, he is disturbed by some of the images he sees in dark windows; he says he feels like extra people (strangers) are in the room when this happens.
These setbacks occurred while he was sick with a viral infection, and recently when he was taking prednisone for a flare up of gout. He had problems getting to sleep, some confusion about who I was and where he lived while he was taking prednisone. This has improved considerably since then. Also, for more than 18 months, Steve participated in the Eli Lilly gamma secretase trial that was stopped this past summer; when they evaluated the data, they learned that people receiving the drug had accelerated worsening of their disease compared to people on the placebo; this was a crossover trial, meaning that, at some point after 14 months in the study, people on the placebo were switched to the actual drug. Due to certain common side effects, we suspect that Steve was only on the actual medication a short time, but I wonder if some of the new problems could be explained by this drug. It is ironic that his MMSE scores would improve enough to allow him to qualify for a clinical trial, only to receive a drug that could potentially make him worse.
Steve’s Current Oil Regimen:
MCT + coconut oil, mixed half and half - 3 tablespoons per meal, three times a day.
Fish oil 15 ml (3 teaspoons) per day of which 5 ml is cod liver oil and 10 ml fish oil.
It took many months for Steve to be able to tolerate this much MCT and coconut oil. Why so much? We are trying to make as much ketone as possible available to the brain.
Regarding the fish oil, people with Alzheimer’s disease as a group are deficient in DHA (one of the elongated omega-3 fatty acids); DHA is a large component of the brain and crucial to its normal functioning. A recent study showed that people with Alzheimer’s may be deficient in an enzyme in the liver that converts the shorter vegetable form of omega-3 fatty acids found in soybean and flax oils to the DHA and EPA forms of omega-3 fatty acids needed by the brain and other organs. Therefore it is important to include a marine source of omega-3 fatty acids in the diet. There are algae forms marketed to pregnant women available in pharmacies for those who have a problem with fish oil. Coconut oil contains some omega-6, but no omega-3 fatty acids.
Why we are mixing MCT oil and coconut oil:
Initially, we began cooking with coconut oil and replaced most other fats in our diet with coconut oil so that Steve received at least 2 tablespoons twice a day at breakfast and dinner. Ketone levels were run with 35 grams (just over 2 tablespoons) coconut oil at breakfast and at dinner and two weeks later using 20 gm (4 teaspoons) of MCT oil at breakfast and dinner. His levels with coconut oil peaked at 3 hours after breakfast and were still present but nearly gone by dinner. After dinner the levels were higher and still heading up after 3 hours. With MCT oil the levels peaked at 90 minutes and were gone by three hours. Thereafter, Steve received coconut oil at each meal to try to keep the ketones circulating all of the time.
In July 2008, with the encouragement of Dr. Veech, we began adding MCT oil to achieve higher levels. We have kept the coconut oil in the mix due to the longer duration of ketone levels and also due to its antimicrobial properties; there is research suggesting the virus that causes fever blisters, a herpes simplex virus, may be responsible for Alzheimer’s in people with the ApoE4+ genotype. The lauric acid in coconut oil kills the herpes family of viruses by dissolving the lipid capsule around the virus (see several post on my blog for more detail at www.coconutketones.blogspot.com). As we arrived at higher amounts of MCT oil, Steve experienced some diarrhea, so we had to increase this very gradually. We also found that this is less likely to happen if taken with food. For nearly two years I mixed the MCT oil 4:3 with coconut oil, but now just mix it half and half.
How to mix MCT oil and coconut oil:
MCT and coconut oil mixed together stays in liquid form at room temperature, so mixing it becomes very convenient. Coconut oil is often solid at room temperature, so first I put the container of coconut oil into a bucket of hot tap water to allow it to melt. It will usually become liquid within twenty minutes or less if you change the water a couple of times as it cools off.
Then I use the glass quart (32 ounce or 1 liter) jars that the MCT oil comes in to mix the oils. A funnel and a 16 ounce (or 500 ml) measuring cup make the process easier. Measure out 16 ounces (or 500 ml) of MCT oil and use the funnel to pour into an empty jar. Then pour 16 ounces (or 500 ml) of coconut oil into each jar. Invert the jar several times to mix. Do this again before each dose to make sure they are mixed.
Optional: Add 1-2 teaspoons (5-10 ml) of liquid soy or egg lethicin to each jar as an emulsifier; this may allow the oil to mix more easily into other liquids or foods. Also, lethicin contains phospholipids that are important to the structure of the brain, so it won’t hurt to have some here.
How much to take: Many people experience diarrhea if they take too much too fast, so I suggest starting with a small amount, such as 1 teaspoon 2-3 times a day and increase gradually as tolerated.
Have others reported improvements?
Since the St. Petersburg Times published the article about us October 29, 2008, the information has become widely disseminated on the internet and by people giving copies to others. More than 700,000 people have looked at this website and the original article and summaries of it have been published in numerous newsletters.
I have received very many reports from caregivers about their loved ones, and have also read on various forums and message boards about people who have had dramatic improvements like Steve, and many others with more subtle improvements. Not all of the reported improvements are in cognitive test scores, but cover other areas that are important to humans, such as better social interaction, better recognition of loved ones, improved conversation, resumption of activities, better appetite, better sleep, having more energy and being more talkative. Some have very gradual improvement that turns into very significant improvement over several months. Others feel they see no change, but I encourage them to continue the oil and to keep a journal, so that they can decide months from now if their loved one has at least stabilized and not worsened. Several people have now told me emailed they did not realize how much the oil was helping until they stopped it.
I have also heard from some people with diseases other than Alzheimer’s who believe they have seen some improvements, including other forms of dementia (FTD, CBD), Parkinson’s, ALS (Lou Gehrig’s), Huntington’s, MS, bipolar disease, even glaucoma and macular degeneration (which affect neurons).
In October 2009, I was invited to give a talk at the Weston A. Price Foundation conference in Chicago about coconut oil for Alzheimer’s. In 2010, I compiled information from 47 and later 60 people with dementia who provided me with information about their loved one’s response to medium chain fatty acids (coconut oil and/or MCT oil). I was pleased to give an oral presentation of the case report about Steve at the Alzheimer’s Disease International conference in Thessaloniki, Greece in March 2010, along with a poster presentation of responses of other people with dementia. In October 2010, I gave two poster presentations on the same subjects at the International Symposium on Dietary Interventions for Epilepsy and Other Neurologic Diseases. Steve and our daughter Joanna travelled with me to Greece and Scotland.
We are very thankful that Steve is among those who have improved and wish with all of our hearts that this would be the case for everyone.
Steve’s Diet:
We adhere to a “whole food” diet, and avoid processed foods, and reduce carbohydrate intake overall. We eat fish several times a week; poultry, occasional beef, fresh, or fresh frozen, fruits and vegetables; whole grain bread, rice or pasta (relatively small amounts); eggs, whole dairy, goat milk/cheese, coconut oil and coconut milk. For lunch meats we eat “all natural” brands that have no artificial color or preservatives. We buy organic, cage free, or free range whenever possible. We do have the occasional treat but overall stick with this program.
Steve’s other supplements:
In addition to taking coconut/MCT oil and fish oil/cod liver oil (rich in vitamins A and D) Steve continues to take Exelon and Namenda. I don’t know that the following constitutes a magic formula, however, the science is such that it seems reasonable for him to take certain supplements. He takes some of these in the morning and some in the evening to avoid taking so many pills at once. Some are in powder form and blended into kefir (liquid yogurt) at breakfast. This is his current list:
B vitamins: Folic acid, folate, niacin, B12; pantethine (B5) powder
Oil based forms of vitamin E (400 IU mixed tocopherols) and vitamin D3 (2500 IU per day)
Vitamin C (2000 mg per day)
Niacinamide (3000 mg per day)
Turmeric
Magnesium
Acetyl-L carnitine
CoQ10 as ubiquinol
D-ribose powder
Phosphatidyl serine
Chromium
Zinc
L-lysine powder about 3 grams per day and valacyclovir 1 gram per day to try to suppress outbreaks of fever blisters.
Caffeine 400 mg per day
Is there any progress with the ketone ester?
There are some developments to report with Dr. Richard Veech’s ketone ester research. Human toxicology testing was completed in the summer of 2009. There were no untoward adverse effects and the FDA approved the ketone ester for use in healthy adults. A study of “rowers” and “couch potatoes” is in progress in Oxford England using the ketone ester to determine if there are effects on cognitive and physical performance in otherwise healthy people. He still needs funding to mass produce the ester for clinical trials for Alzheimer’s and other diseases, and hopes to find a charitable or government source rather than going to a drug company or other for-profit entity. He wants to keep the cost down, so that the ester will be available to everyone who needs it. The ketone ester will allow much higher levels than is possible by taking large amounts of MCT or coconut oil. This should translate into more improvement.
Cognate Nutritionals LLC:
Dr. Theodore VanItallie, who has studied ketones and effect of the ketogenic diet on persons with Parkinson’s disease, is developing a liquid nutrition supplement product that will be available late summer 2011 and will make it easy and pleasant to take coconut oil and MCT as a measured dose. Website will be up in a few months: www.cognatenutritionals.com.
Watch for the Book: Alzheimer’s: What If There Was a Cure? The Story of Ketones, by Mary T. Newport, M.D., anticipated publication date in August 2011, Basic health Publications, Inc.