A hopeful Alzheimer's experiment that has possibly failed - guest post by my Dad

Laury and Trevor (Mum and Dad).

When Miss S was a baby, my mother, Laury, was diagnosed with Alzheimer's Disease. We had noticed memory problems and disorientation in her for a number of years, so although the diagnosis was not a surprise, it was still very sad. 

We've all dealt with it in our own ways. Mine has been through prayer and trying to find natural food-based cures. Recently I came across the book, Alzheimer's: What if there was a Cure? on The Coconut Oil Shop. I told my Dad about it and we both got copies to read.

My Dad wrote the following article based on his experience trying to treat Mum's Alzheimer's Disease through the suggestions given in the book. 

A hopeful Alzheimer's experiment that has possibly failed
This article describes an experiment that was apparently unsuccessful in our case, but which I believe may still give worthwhile results for other people, for reasons that I will explain.

In 2011, my wife Laury was diagnosed as having Alzheimer’s disease. The outward symptoms are not too great so far. She has some memory problems, and household tasks that she used to be able to do easily now take thought and concentration, but she is still able to be a sociable companion and friend to me and life remains sunny for both of us.

An exciting prospect

Despite our present good times, we are alert to any possible treatment that might alleviate Laury’s condition, so were interested when we came across the book, Alzheimer's Disease: What if There was a Cure?

The author, Mary T. Newport, is a paediatrician whose own husband, Steve, was diagnosed with Alzheimer’s disease in about 2003. Five years later, Dr Newport stumbled upon a report that a biotech company named Accera had developed a drug that showed promise for alleviating some forms of Alzheimer’s disease.

The rationale behind the Accera drug was this: in some forms of Alzheimer’s it appears that problems arise because brain cells (neurons) do not obtain sufficient energy from glucose, so suffer irreparable damage and die. 

However, it is possible for the neurons to obtain energy from an alternative source, ketones. 

The theory is that if a patient with glucose-deficiency Alzheimer’s were to start soon enough on ketone treatment, the dying-off of neurons would be stalled and so too the progress of the Alzheimer’s symptoms. Accera had therefore developed a drug that could, they believe, deliver high but safe doses of ketones to the brain.

When Dr Newport found this information in 2008, Accera had only just reached the stage of applying to the FDA for approval to carry out a rigorous trial of the drug. An approved drug was obviously going to be years away, but the theory behind the drug seemed sound, and Steve Newport needed help immediately. Therefore, Dr Newport asked if there were any natural products that might deliver ketones to the brain in the interim, even if at a lower level than the drug. She learned that coconut oil was one such source. Having checked that there was no likely conflict with Steve’s existing medication, Aricept (i.e., Donepezil) she immediately began to include coconut oil in Steve’s meals.

The results over the following weeks and months were dramatic:

• A test called the Mini-Mental Status Exam (MMSE) can be used to assess the state of a person’s short-term memory. The maximum possible score is 30. Steve’s score climbed from a pre-coconut oil low of 12 to 20 after two months on the new diet. Dr Newport doesn’t mention any further change, so it seems that his score remained at 20 subsequently.
• The day before starting the coconut oil trial, Dr Newport had Steve try to draw the face of an analogue clock. The result is shown on page 63 in her book. If you had not been told what you were looking at, you might well not guess. She repeated the experiment two weeks later, and again after 67 days (pages 71 and 72). The second drawing is unmistakably a clock, though still imperfect, and the third even crisper.
• An MRI scan in 2010, after two years on the coconut oil diet showed his brain atrophy had stabilised, with no deterioration since Steve’s prior scan in 2008. This contrasted with the huge deterioration seen when the 2008 scan was compared with one from 2004.
• Steve moved from needing help pre-coconut oil with even simple tasks such as putting on his shoes, to holding down a part-time volunteer job in 2009.

Coconut oil and Laury

Dr Newport’s book also contains anecdotal evidence from other Alzheimer’s sufferers who learned about her theory from papers she had published prior to the book itself and who had successfully tried out the coconut oil diet.

Therefore, encouraged by the book, we began on 11 February 2014 to include coconut oil in Laury’s diet.

No MMSE tests or MRI scans would be available to measure her progress, but the day before the diet started, I got her to draw a clock. It was recognisably a clock and much better than Steve Newport’s first attempt, but still well askew even though Laury was a capable artist in pre-Alzheimer’s days. 

Laury's first clock drawing, 11 February 2014.

I hoped she would draw better and better clocks as the test progressed, as Steve had done.

We began by including 2 tablespoons of coconut oil, three meals a day, but after a month there had been no tangible improvement in Laury’s problem-solving ability or short-term memory, so I didn’t even ask her to draw a clock.

I reread Dr Newport’s book to see what I might have missed:

• We had been using mid-priced oil (“blue coconut” brand). It was not virgin oil cold-pressed from raw coconut, but neither was it hydrogenated. So far as I could see, its processing method would have reduced its Vitamin E content but not the ketone content. Nevertheless, we switched to using virgin oil at about double the price, just in case.
• Dr Newport also suggested (p. 319) that the supplements Coenzyme-Q10, L carnitine, magnesium and D-ribose could be useful adjuncts to the treatment, as they all have a role to play in the processes by which a source such as glucose or ketones are converted to usable energy within the body’s cells. Therefore, we began to include those four supplements in Laury’s diet, too.
• Prednisone and similar drugs can cause problems (p. 155-156, 244). Laury was on a small dose of prednisone, at the tail end of treatment for polymyalgia. We stopped that dose and the polymyalgic pain did not return, so we dropped the prednisone from her daily regimen. 

A second month went by, and we still saw no evidence of improvement Laury’s memory or the way she functioned at tasks. 

I scanned the book again and spotted a recommendation to increase the coconut oil intake to whatever level the person could tolerate without suffering diarrhoea or other gastric upset.  In Laury’s case, that turned out to be four tablespoons full of oil per meal, so that was the dose we used through the third month.

However, there has still been no tangible change in her memory or task skills, and just one small possibly hopeful indication. A clock drawn on 12 May 2014 is distinctly better than the one drawn three months previously, but without other evidence of change, it is difficult to be sure that coconut oil is the reason. 

Laury's second clock drawing, 12 May 2014.

We will continue to use coconut oil in our diet, as this whole project has alerted us to its general benefits, but not at the elevated levels of the past three months. I think we need to conclude that in Laury’s case, the coconut oil will not provide a sufficient benefit to warrant the expense of using high amounts of it.

A possible indicator of likely success or failure

On page 35, Dr Newport mentions that around the time her husband’s Alzheimer’s was diagnosed in 2003, he had developed a craving for sugary foods, though blood tests at the time ruled out diabetes. She has since learned from other sufferers or their families of a frequent correlation between Alzheimer’s disease and a craving for sugar.

Laury, on the other hand, has never shown an abnormal craving for sugar, so I wonder if this is a way to discern beforehand whether the coconut oil diet is likely to benefit a particular Alzheimer’s sufferer – if no craving for sugar, then probably not.

Stop press

Emma has sent us a gift of MCT oil, which is a derivative of coconut oil that has an even higher concentration of Medium Chain Triglycerides. Dr Newport recommends using a combination of MCT oil and coconut oil if possible, but doesn’t think it is absolutely essential. 

Blood tests have shown that MCT oil raises ketone levels higher than coconut oil, but the levels drop off more quickly than ketone levels that result from coconut oil (about 3 hours for MCT oil vs 6 to 8 hours for coconut oil). Combining the two oils yields the valuable early boost from MCT oil and the longer-lastingness of coconut oil.

As a result of this gift, we will extend the full-scale trial with Laury for another month, to see if the MCT oil proves to be the trigger that makes the difference.

Conclusion

As clinical trials and other studies continue, it seems that we should have definitive answers regarding ketone therapy and its range of applicability within the next four or five years. In the meantime, the theoretical background and anecdotal evidence that Dr Newport’s book provides leads me to believe that it would be worthwhile for anyone who cares for someone who is in the early years of Alzheimer’s to trial them on a coconut oil diet, and especially so if their Alzheimer’s symptoms are accompanied by a craving for sugar.

Note: the Alzheimer’s related medications Aricept (Donepezil), Namenda (Memantine), Exelon (Rivastigmine) and Razadyne (Galantamine) are known not to conflict with the use of coconut or MCT oil, (Newport, 2013, p. 60), but  if the person is on an Alzheimer’s medication other than these four, or is on meds for other conditions, you should check for possible conflicts before starting the coconut/MCT oil diet.

References:

Newport, M. T. (2013). Alzheimer's Disease: What if There was a Cure? (2nd ed.). Laguna Beach, CA: Basic Health Publications, Inc.

Note from Emma: The last email I had from Dad said, "Mum thought she felt an immediate impact in her brain from the MCT, so let's hope that continues!"