One wife's crusade: Coconut oil helped husband with Alzheimer's
Published: Sunday, March 31, 2013 at 6:01 a.m.
Last Modified: Saturday, March 30, 2013 at 7:04 p.m.
The first sign of trouble for Steve Newport was confusion.
An accountant by trade, he suddenly began to struggle even with basic math. And although he was a whiz with technology, he found that he couldn't operate a simple calculator, let alone a computer.
“At one time, he could practically take apart a computer,” said his wife, Dr. Mary Newport, the medical director of the newborn intensive care unit at Spring Hill Regional Hospital in Hernando County. “After awhile, he couldn't even turn one on.”
Steve got worse.
His personality changed. He became vacant, distant. He developed tremors. His gait became unsteady. Then, he couldn't explain passages he'd read. And, finally, he couldn't read at all.
It was clear to Dr. Newport that Steve, at just 53, was developing early onset Alzheimer's, a fact confirmed by testing.
It was 2003, and while researchers were working feverishly to develop effective Alzheimer's treatments, progress was slow.
Still, Dr. Newport knew she had to try whatever was out there.
The commercially available medications didn't help. As Steve's condition worsened, Dr. Newport began scouring the Internet for possible remedies and, at the same time, began trying to enroll Steve in clinical trials for some of the next-generation experimental drugs.
When a pharmaceutical company agreed to consider Steve for a clinical trial of a vaccine, she took him to the Byrd Alzheimer's Institute at the University of South Florida to be screened for the study and prayed that he would score in the mild-to-moderate range for Alzheimer's symptoms because the company didn't want anyone whose symptoms were so severe that there was little chance of improvement.
Her heart sank, however, when Steve scored just 12 out of 30; he needed to score 16 to be accepted. She continued her online research, while also looking for new medical trials for Steve.
Dr. Newport's research yielded an interesting discovery: a patent for a drug whose main ingredient was medium chain triglycerides (MCT), the same ingredient found in large quantities in coconut oil. A small pilot study found that the drug helped slow and even reverse the effects of Alzheimer's in a significant percentage of those tested.
But the drug wasn't on the market yet. In fact, the FDA had yet to approve a large clinical trial of the drug. It seemed to be a dead end.
In May 2008 she took Steve to be screened for a trial of an Eli Lilly drug. She coached him on the way, reminding him of the date and the city where they were headed in hopes he would remember enough to pass the test. He didn't. Steve scored a 14, again below the 16 needed to enter the trial.
On the way home, Dr. Newport thought about her research on MCT and, out of sheer desperation, drove an hour out of her way to the only health food store she was sure would have coconut oil.
“I thought, ‘What do I have to lose,' ” Dr. Newport said.
She poured a couple of tablespoons on Steve's oatmeal the next morning, then stirred in a couple more with his dinner.
She drove him back to USF the next afternoon to take the test again, and to her relief, Steve scored an 18 this time.
Although Steve was accepted into the trial, Dr. Newport thought she might be onto something and continued feeding him coconut oil. She said his personality returned, the hitch in his step went away and he began to read again.
“He said it was like a light switch clicked on and the fog lifted,” she said.
“My family kind of confirmed what I was seeing. After a family gathering, they said he recognized people he hadn't recognized before and he could keep up with the conversation. And within a couple of weeks, it was clear this was real.”
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Whether Steve Newport's response to coconut oil is real is a matter being hotly debated in medical circles and among Alzheimer's support groups.
In 2008, Dr. Newport wrote a report about her husband's experience with coconut oil and tried to circulate it at national conferences sponsored by the Alzheimer's Association but said she was blocked by the group.
The Alzheimer's Association, the nation's leading advocacy group for sufferers of the disease, says it does not endorse what it calls “medical foods” that don't undergo the same rigorous scientific testing as pharmaceuticals do.
“Basically, we get information all the time about something someone has tried and it worked, and what do we think?” said Kay Redington, CEO of the Central and North Florida Chapter of the Alzheimer's Association.
“But when you see advances made in science and treatment, it's usually not someone who took something in their kitchen. It's scientists using rigorous standards in testing.”
Dr. Newport, herself, acknowledges that it's too soon to brand coconut oil a wonder drug, admitting that it needs further investigation.
Many companies and academics involved in Alzheimer's research go further, dismissing the remedy as unproven and fretting that Alzheimer's sufferers and their caretakers might embrace an ineffective and oversimplistic cure and ignore more promising drugs on the market or in development.
But the current Alzheimer's drugs are, by most accounts, only moderately effective, and only for a short period of time.
Redington, of the Alzheimer's Association, acknowledged that the drugs on the market temporarily ease symptoms of the disease for some sufferers — although many people can't tolerate the side effects — “but after 12 to 18 months, even those effects wear off and they begin deteriorating again.”
There is some promising research under way by private companies and the National Institutes of Health, she said, that seeks to short-circuit Alzheimer's years before it manifests itself in patients.
Dr. Newport is keenly aware of the ineffectiveness of the current raft of Alzheimer's drugs and wonders why the Alzheimer's Association doesn't at least make sufferers aware of the possible benefits of coconut oil.
“What do they have to lose? It won't hurt, but it could help,” she said.
It isn't just Steve Newport's experience with coconut oil that intrigues his wife, however. Experiments in mice and small-scale trials in people have yielded encouraging evidence that medium chain triglycerides, the key ingredient in coconut oil, slow and even reverse the effects of Alzheimer's.
Alzheimer's sufferers are believed to have trouble processing glucose — sugar — as essential fuel for the brain. But some researchers say MCT spurs development of ketones in the liver, which the brain can use as a rich alternative fuel source.
Aside from ingesting MCT, most people generate significant quantities of ketones only when they are starving or when they are on an extremely low-carbohydrate diet like Atkins.
A pharmaceutical company called Accera administered MCT to 156 patients during a controlled, double-blind study in 2009 and found significant improvement in their cognitive function.
The research served as a springboard for development of a drug named Axona, which Dr. Newport said is simply a powdered version of the same MCT found in coconut oil.
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Undeterred by the chilly reception of the scientific community, Dr. Newport has waged a years-long grass-roots campaign to spread the word about MCT.
She has continued to hound the Alzheimer's Association, medical researchers and pharmaceutical company officials, has been profiled in the Tampa Bay Times, and became an Internet sensation after the Christian Broadcasting Network (CBN) aired a story about her. She also authored a book in 2011 called “Alzheimer's Disease: What If There Was a Cure?”
More recently, she spoke to a capacity crowd at Ocala's Institute for Human and Machine Cognition.
All her efforts may be paying off.
The Byrd Institute at USF is planning a major clinical trial of coconut oil in April. The trial, the first of its kind, is being funded by an anonymous foundation, said Dr. David Morgan, CEO and director of the Byrd Institute.
“There is not much data on coconut oil in a randomized, placebo-controlled setting,” said Dr. Amanda Smith, who is heading the research team at Byrd. “The impetus came from the number of inquiries we get about it daily from patients and families as a result of Dr. Newport's media coverage. She had very interesting results with her husband, and she subsequently received a number of anecdotal reports from others who tried it. Because so many people ask about it, we wanted to test it in a controlled manner.”
Like the Alzheimer's Association, Dr. Smith said the current drugs on the market are not very effective, “though they are better than nothing at all.
“These drugs, to our knowledge, do not really affect the underlying disease process. They can just help people keep elements of thinking and function for a little bit longer,” she said.
The Byrd Institute's interest in coconut oil and its ketone-generating properties is not surprising considering that USF is already doing extensive research with ketones, the substance that fuels glucose-deprived brains in Alzheimer's patients.
University researchers are working with the Department of Defense to understand how ketones might counteract the dangerous physiological impacts on Navy SEALS who dive to great depths. Their hope is to be able to develop a synthetic ketone that will allow SEALS to operate safely and efficiently in extreme environments.
But those researchers believe ketones may also hold promise for treating an array of neurological conditions, including Alzheimer's, ALS and Parkinson's.
Dr. Newport needs little convincing.
“It may seem simple, but it's simply true that this may help some people,” she said.