Spring Hill couple's Alzheimer's fight tries boost in brain superfuel

They are brain boosters from caveman days that allow humans to survive on nothing but water.

They nurture newborns right out of the womb.

Now ketones — a kind of superfuel for brain cells— are drawing interest as possible treatment for Alzheimer's disease.

In March, a Colorado company began touting Axona, the first FDA-approved "medical food'' for people with Alzheimer's. The key ingredient is a saturated fat that the liver converts into ketones.

Meanwhile, a federal scientist is examining whether ketones might help soldiers think and fight better. He hopes to expand his work to people with Parkinson's disease and Alzheimer's.

Then there is Spring Hill resident Steve Newport. His wife retrieved him from an Alzheimer's funk 14 months ago by loading him up with saturated fats found in coconut oil.

He says he feels "alive again."

This does not mean the promised land is around the corner.

Coconut and other ketone-producing oils can cause diarrhea and cramping. Cardiologists say they will clog arteries.

Still, the science behind ketone bodies is intriguing and caregiver bulletin boards are sprinkled with hopeful anecdotes.

An 83-year-old woman in Connecticut is dressing herself again.

A 62-year-old man in California is cracking off-color puns.

And in Spring Hill, Steve Newport mows the lawn without disassembling the John Deere.

• • •

The human body gets most of its energy from sugar, which comes from carbohydrates. But take away carbs, and the liver will start producing ketones — small fragments of carbon that can serve as a substitute fuel.

Humans can survive about two months on nothing but water because the liver madly pumps out ketones.

"Ketones are evolution's survival mechanism for starvation,'' says Theodore VanItallie, professor emeritus of medicine at Columbia University.

A few years ago, VanItallie and colleagues treated five patients with Parkinson's disease with an extreme low-carb, low-protein diet that approximated starvation for 28 days.

Tremors decreased by 43 percent.

One early hallmark of Alzheimer's is that nerve cells stop processing sugar and die. Maybe ketones can plug that fuel gap and keep those brain cells alive.

In March, a company in Broomfield, Colo., called Accera Inc. started marketing Axona.

It produces ketones without starving the patient.

The key ingredient is a saturated fat called caprylic acid. The liver converts a portion of it into ketones, regardless of what else a person eats.

The Food and Drug Administration has not determined that Axona works, only that it is safe to eat and targets an identified nutritional deficiency.

Company literature says daily Axona servings improved cognition scores in people with mild to moderate Alzheimer's.

"It's conceptually very interesting. It seems to have a reasonable scientific basis,'' says Neil Buckholtz, head of dementias for the National Institute on Aging. "My major concern is that their clinical trials have never been published in peer-reviewed literature.''

Accera chief executive officer Steve Orndorff says clinical trial data will be published in a few weeks.

Axona costs about $72 a month and requires a prescription. It works in conjunction with traditional medicines for Alzheimer'.

"This offers physicians for the first time in 15 years a new therapy that works through a different mechanism,'' Orndorff says. "If we can show that Axona, coconut oil and other molecules work, we are going to open up a whole new area of research.''

• • •

Mary Newport, a pediatrician who runs Spring Hill's neonatalogy clinic, scrounges for any Alzheimer's information she can find. Her husband is an accountant who began struggling with numbers in his mid 50s.

Last year, she ran across a report of Axona's clinical trials, well before it hit the market. Not wanting to wait, she began feeding her husband large doses of virgin, nonhydrogenated coconut oil, available at Wal-Mart for less than $7 a quart.

Coconut oil contains a mixture of saturated fats. The liver converts some into ketones. Others float around in the bloodstream, which is why cardiologists usually discourage its use.

The effect on Steve Newport was immediate.

"He said it was like someone had turned on a lightbulb,'' Mary Newport says. "He was alert, smiling, joking. He was Steve again. He was back.''

One standard test for dementia is having a person draw a clock face. Before the coconut oil, Newport could manage only amorphous blobs. After the oil, his clocks looked like clocks.

A story last November about the Newports appeared in some editions of the St. Petersburg Times and on tampabay.com.

Since then, Newport has continued to improve, his wife says. He still speaks in halting sentences, but he is reading again, volunteering at his wife's hospital and mowing the lawn. Before coconut oil, he would dismantle the mower, pour oil in the gas tank and forget about the lawn.

Mary Newport acknowledges that she cannot pinpoint the source of her husband's continued improvement.

About two months after she started the coconut oil, she also entered him into a clinical trial for a new Alzheimer's drug. She also began mixing in MCT oil, a supplement favored by body builders. MCT oil also contains fatty acids that produce ketones.

In all, Steve Newport takes six to seven tablespoons of fatty oil a day, mixed into his food. Any more than that gives him diarrhea.

To counteract artery clogging, his wife has reduced other fats in his diet. His cholesterol scores have not risen, she says.

• • •

Dr. Richard Veech, a metabolic specialist at the National Institutes of Health, is working on the Holy Grail of ketone therapy: the ketones themselves.

The Defense Department is paying to see if including ketones in field rations might give soldiers more stamina.

Veech does not starve his subjects, nor feed them fatty oils. He manufactures ketones in the laboratory, then feeds them to his subjects. That raises their ketone levels 20 times higher than coconut oil or Axona does.

The results in rats have been promising, Veech says, and tests on humans will begin soon at Oxford University, using rowing crews as surrogate soldiers.

If he can figure out how to mass produce ketones, Veech says, he hopes to expand his work to Parkinson's and Alzheimer's.

• • •

After Mary Newport's posts on the Internet, other caregivers began spooning coconut and MCT oils into coffee and oatmeal.

Not everyone showed improvement, but in Sandy Hook, Conn., 83-year-old Mary Hurst started dressing herself again.

Before the oil, she would never leave her nightgown and robe. She would sit in a chair all day, incommunicative "like a vegetable,'' says her daughter Diane Standish.

Recently, Hurst walked into the kitchen and opened the refrigerator, something she hadn't done in years, Standish says.

Asked what she was doing, Hurst retorted: Getting myself a piece of cake, do you mind?

"She remembered that I had brought her a cake the day before,'' Standish says. "Miraculous.''

Robert Condap of San Leandro, Calif., talks more after taking in coconut and MCT oils.

When his wife, Gwen, was blow-drying his hair recently, he even cracked an off-color joke.

"I was excited,'' she says. "That was an old part of him coming back.''

Jokes and clothes are small victories, maybe unmeasurable in scientific studies. But Gwen Yee Condap doesn't care.

"This is not a cure. This is about improving quality of life,'' she says. "And we'll take any minimal improvement there is.''

. FAST FACTS

Learn more

• Dr. Mary Newport's Web site: www.coconutketones.com.

• Accera's information on Axona: www.accerapharma.com.

• The Alzheimer's Association statement on medical foods: www.alz.org/national/documents/statements_medicalfoods.pdf.

• Caregiver discussions about coconut oil, MCT oil and Axona can be found at http://alzheimers.infopop.cc/eve. (For a key word search, click on the purple "Find'' button at the top of the list.)

ON THE WEB: Mary Newport talks about her husband's disease and treatment at tampabay.com/video.

Spring Hill couple's Alzheimer's fight tries boost in brain superfuel 08/02/09 [Last modified: Tuesday, August 4, 2009 4:15pm]

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