Don't give up! Some new treatments on the horizon

I hear from some people who are very discouraged because they do not see improvement in their loved one with Alzheimer's. About half of the people in the MCT oil studies declined minimally rather than improving, but declined less than the people who took the placebo. So this strategy may be worthwhile continuing even if results are not obvious in the beginning. Also, some people improve rather slowly but over two to three months, the changes may become more apparent, or perhaps you will see that things are not worse.

If you are considering giving up on this, you might consider the possibility that this strategy could at least stabilize or slow down the process for your loved one. Hopefully we will be able to learn why some people improve and others don't. After attending the American College of Nutrition Conference at the beginning of October, I have some ideas about why this happens. It could be that the cells are so depleted of the various substances they need to make energy inside the cell that the cells don't recover simply by providing ketone. I learned more about other disease processes where there is also a problem with energy production in mitochondria, the organelles inside of the cells that manufacture ATP, the very basic energy that drives the whole function of the cell. Each cell has hundreds to thousands of mitochondria.

Dr. Stephen Sinatra discussed several dietary supplements that help people with severe congestive heart failure by providing certain subtances involved in manufacturing ATP in the mitochondria in the cells. In the case of congestive heart failure, the cardiac cells have become depleted of these substances and are not making enough ATP to keep the cell going. Three of the supplements we have been giving Steve for quite some time, CoQ10, L-carnitine and magnesium, but the fourth I did not know about, D-ribose. D-ribose is a simple sugar normally made inside the cell from glucose, and is one of the building blocks for ATP. It makes sense that if glucose cannot even get into the cell that the cell will not be able to make D-ribose, which is critical to making ATP. It is not stored elsewhere in the body and it is not present in any quantity in foods, but is used by body builders and available as a supplement. For people with cardiac diseases, Dr. Sinatra recommends taking about 5 - 7 grams of D-ribose per day. It comes in a powder (disappears without much taste in coffee or any drink) or chewable tablet (not so good to my tastebuds.) I have many questions about it, such as does it cross the blood brain barrrier and how does it enter the cell, and of course, it is safe? I have not been able to find out much about it. If there is a chemist or other scientist out there with more information about D-ribose, I would appreciate hearing from you. When I learn more I will post something about it.

Dr. Sinatra has a book called, "The Sinatra Solution: Metabolic Cardiology" that discusses these supplements in detail, but is very technical. I believe that this strategy could help people with AD since the mitochondria work the same as far as producing enery in all of the cells. After reading up about this, part of the problem in AD may be that the cells become depleted of these substances, such as CoQ10, from some of the medications our people with AD are often on (anti-depressants, statins.) Also the whole process of making energy in the mitochondria depends on being able to get glucose (or ketone bodies as an alternative) into the cells in the first place and this is not happening.

Just as a point of interest, the earliest work by Dr. Veech and his group was studying the effect of ketone on the heart - the additon of ketone to glucose increased the energy output of the heart by 25%. If insulin was also present, the energy out put increased by 37%.

We also recently attended a research update at our local Johnnie Byrd Alzheimer's center, which is part of University of South Florida, and they have learned that caffeine may increase cognition in AD - they suggested 500 to 600 mg a day - you can buy caffeine tablets very inexpensively at the drug store. I started Steve with a 200 mg tablet and increased by one tablet weekly to 600 mg; I always give it at breakfast. It doesn't affect his sleep at all or cause any other symptoms. They are also studying a substance called GM-CSF which is already in use to increase white blood cells in people with cancer, etc. In mice is cleans out the beta-amyloid plaque rather quickly, over a week after just one injection. Absolutely amazing. Hopefully they will be able to get studies in people started soon.

There are some new clinical trials starting up that are using intranasal insulin and also immune globulin. You can learn about what clinical trials may be available in your area at www.clinicaltrials.gov . We live in a very small town and have a small research that has several different Alzheimer's studies going. In other words, you may not need to be near a large center to participate in a study.

Direct link to 6 part interview series

Instead of going to YouTube, the six part series of Steve and I with Ken Lightburn can now be viewed at http://www.youtube.com/watch?v=iScs0uzQZFk

Ketones: The YouTube Interviews

There is now available on www.YouTube.com a six part series of interviews about ketones, coconut oil and MCT oil and the potential benefits for people with Alzheimer's, Parkinson's and other neurodegenerative diseases. The primary purpose of making these videos is to increase awareness of the need for funding for large scale production of the ketone ester made by Dr. Richard Veech at the NIH. My secondary goal is to let people know that the medium chain triglycerides in coconut oil and MCT oil can produce circulating ketones that can act as an alternative fuel for brain and other cells that are insulin resistant and cannot use glucose as a fuel; the levels are considerably lower than those that can be achieved with Dr. Veech's ketone ester, however, some improvement or stabilization of disease may still be possible with the oils.

Collecting responses for Dr. Veech

I am putting together an anonymous spreadsheet of people who have contacted me regarding a response (or lack of) to coconut oil and/or MCT oil and/or Axona for the purpose of trying to get funding for Dr. Veech's ketone ester research at the NIH. The specific information I need is the person's age, sex, diagnosis, if known, what forms(s) of the oil they have been using, their response in as much detail as possible, and any side effects, such as diarrhea; also if the cholesterol, triglyceride profile has been checked, the results would be very helpful also. To participate, you can email me back at preemiedoctor@aol.com. If you have settled on a particular "dose," that would be helpful to know as well.

The ketone ester will make it possible to get considerably higher levels of ketones than the oils. When I wrote my article "What if there was a cure for AD and no one knew?" the cure I am referring to is the ketones, not so much the coconut oil. Dr. Veech is finishing human toxicity testing this month on healthy subjects, reaching levels about 15 times what were measured with Steve on coconut oil, and there have been no adverse effects. He has also learned that there appears to be more to the ketone effect than just working as an alternative fuel; ketones also appear to be involved with growth of new neurons and nerves. He is able to make about 10 pounds of the ketone ester a week in his lab, but needs funding for a facility to make it in much larger quantity to test in AD, Parkinson's and other neurodegenerative diseases. In the meantime we can use the oils with medium chain triglycerides to produce ketones; the true cure will be the ketone ester itself.

For those who want to learn more about ketones, there is an article today in the St. Petersburg Times about ketones, Accera, my husband and other people who have tried coconut oil/MCT oil at www.sptimes.com, where there is also an accompanying video or you can go directly to the article at www.tampabay.com/news/health/research/article1024137.ece. In addition, there is a related video at www.baynews9.com.

Also there is plenty of information on my website www.coconutketones.com. I have been trying to get the message out about this for more than a year since my husband improved so that people can try this if they are so inclined. My goal is to increase awareness so that Dr. Richard Veech will get funding for mass production of his ketone ester which will produce many fold higher levels of ketone than the human body can generate by eating medium chain triglycerides oils.

If you are concerned about cholesterol and other issues related to coconut oil and MCT oil, get your doctor involved and monitor your loved one's cholesterol profile. We have been monitoring Steve's cholesterol/trglyceride profile every few months and his results have been well within the normal range.

Media interest in ketones and coconut oil

A lot has happened this past week:

There is a video of Steve and I now playing (beginning August 1, 2009) on www.sptimes.com . They will be publishing a story in their paper about ketones in the next few days; I am told by the reporter that Steve and I will be a small part of the story. The reporter did interview several others who have had experience with this now.

BayNews 9, a TV channel dedicated to news (Tampa Bay, Florida) interviewed us Friday and expect to run the story on Saturday, August 1, 2009, probably beginning at 5PM for about 12 hours. Many of their stories can also be viewed on www.baynews9.com .

Ken Lightburn, a wonderful man from New York (originally Australia), arranged to make a video interviewing Steve and I about ketones and coconut oil. He intends to put this on www.YouTube.com within the next couple of weeks and also plans to send it to high profile people in the media, such as Oprah and Dr. Oz. He is a coconut oil distributor but also has family members with AD and Parkinson's, and for this reason he and his wife received a copy of my article. He called to talk about it and I mentioned my problems with getting the information out by way of the Alzheimer's Association and the media (I have sent this information many times to various high profile people and the major TV news media.) He called a few days later and said he wants to help get this message out. He was willing to do it without credit, but I feel he deserves credit for doing this. So here goes: The video will also be playing on his company's website, www.naturesapproved.com.

Upcoming St. Petersburg Times article

A St. Petersburg Times reporter contact me a few days ago, who is doing a story about Axona (the prescription MCT oil) and came across the MCT/CO information on the internet. He wants to do a story about the coconut oil and MCT oil along with the story about Axona and wants to talk with some other folks who have had some results with CO or MCT oil. If anyone would like to have some input, his name is Steve Nohlgren and his email address is Nohlgren@sptimes.com .