I have nothing to sell you but hope, and that I give you for free.

The purpose of this web site is to provide you with information for when you meet with a physician to discuss what can be done for someone suffering from brain failure.  You will have a list of questions to ask, and sources to read so that you can ask them intelligently.  I want to share some of the information I've accumulated in my search to help my mother.

Synthetic pharmaceuticals and physician supervised treatment is certainly the preferred course of action to help the brain failure sufferer.  But while you wait for the physicians (who may have treatments) to get off of their duffs and actually try something, here are two substances you can try.  The research papers indicate that this may be the closest you will get to a cure in that these two substances interrupt key steps in the disease process.  Pharmaceutical versions, if and when they ever develop them, should be stronger and more effective.

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Posted November 21, 2008 11:58 AM to the Alz.org forum
http://alzheimers.infopop.cc/eve/forums/a/frm/f/762104261
We started my husband Steve with just over 2 tablespoons (7 teaspoons) with breakfast, which resulted in the a very significant improvement. Since then we have added more with lunch and dinner, basically by substituting it for most of the other oils/fats in the diet, however continuing to include omega-3s, which coconut oil does not contain. Dr. Veech encouraged us to push how much we were giving him to see what his limits of tolerance were - the thinking here is that the more MCT oil in the diet, the higher the levels of ketones and potentially more improvement. Steve receives the equivalent of an average of 80-90 gm a day of MCT oil,as a combination of MCT oil and coconut oil. It has now been six months since we started to do this and the improvement has been sustained. Some things, such as his ability to engage in prolonged conversations and complete jobs around the house and yard without distraction and supervision, have continued to gradually improve. He tells me frequently that he no longer feels like he is "dying" and feels like he has "gotten his life back." He has very significant atrophy on his MRI from 7 months ago, so we can not expect a complete reversal, and what the future holds for the long term is an "unknown," however we have hope now, where before the future looked very dismal. I have gotten considerable feedback from the article I wrote in July - some people have experienced a dramatic improvement and some more subtle. The studies with MCT oil showed that about half of the people improved and the other half on average had minimal decline, compared to the control group, who had the type of decline expected in AD. The message is that since it is an oil used by millions in other parts of the world and is simply a dietary change, it may be worth trying. If you would like a PDF of the article I wrote in July, you can email me at preemiedoctor@aol.com to request this. We are working on setting up a website http://www.coconutketones.com and a blog.

Dr. Mary Newport

Posted November 21, 2008 08:46 PM
Regarding Steve's cholesterol levels, he is averaging the equivalent of about 6 tablespoons of coconut oil a day. His total cholesterol has been measured several times since we started this over the past 6 months and has always been under 200. His latest total cholesterol was 192 HDL was 77 (> 40 normal)and LDL 99 (< 130 normal), both well within the normal range and his triglycerides were 79 (< 150 normal). Before coconut oil, his HDL was at low end of normal and LDL was just over 130. There are references included with the article I wrote, some of which are studies of cholesterol in humans using non-hydrogenated coconut oil. Usually the total cholesterol stayed the same or increased slightly and when it did increase, it appeared to be as a result of the HDL improving. One study showing a worsening of cholesterol was actually performed on rats and used hydrogenated coconut oil and they did not receive omega-3 in their diet, an essential fatty acid. It is important to use a coconut oil that in non-hydrogenated and it is also important to include omega 3 fatty acids, since every cell in the body, including brain cells, need omega 3 to function optimally.

Dr. Mary Newport

Posted January 07, 2009 11:56 AM
My husband Steve is the "subject" of the case study about coconut oil and Alzheimer's disease and I am very pleased to report that after more than seven months, he has retained all of his improvements and continues to improve, albeit more gradually now. The latest improvements are his memory for events and conversations of the previous day(s)with accuracy.
Regarding the coconut oil/ MCT oil, I have put together a website http://www.coconutketones.com, with some information that will address some of the questions in your comments and you can also email me at ketones08@aol.com - I have a multitude of articles regarding ketone research that I can attach. There is a case study on the website that goes into more detail written a couple of months after the original article.
In addition to the ketone production, MCT oil has the effect of increasing circulation to the brain (by 39% with 20 ml or 4 teaspoons of MCT oil) and also, in the form of coconut oil with the lauric acid (12 carbon chain - half of the coconut oil) has been shown to dissolve the lipid capsule of the herpes simplex virus, thereby killing the virus.
I am very interested in hearing from people who have tried coconut oil and what their experience has been with their loved ones. The more detail the better. If it is possible to videotape the person before and periodically after starting coconut oil or MCT oil, especially if there is a tremor or unusual gait or speech problem, it would also be very helpful. I am passing along these reports to Dr. Richard Veech, if permission is given,to help/encourage him with his quest of funding his ketone research.
If you are aware of anyone with Parkinson's, ALS (Lou Gehrig's,) Huntington's chorea, multiple sclerosis, Ducheyne muscular dystrophy, Niemann Pick disease type C, please pass on this information, as they have a similar defect with decreased glucose uptake into other areas of the brain and could potentially benefit.

Dr. Mary Newport

Posted January 07, 2009 12:02 PM
I also meant to mention that the problem with glucose uptake appears to occur as early as age 30 in some people with Alzheimer's as demonstrated by decreased glucose uptake on PET. This process may begin decades before there are noticeable symptoms. There are billions of neurons and the symptoms will become more apparent as these slowly die off. Scientist used to believe that after childhood you could no longer make new neurons, however, in recent years they have shown that to be false and even in late adulthood it may be possible to "sprout" new neurons under the right circumstances. There is a substance called BDNF (brain derived neurotrophic factor) that is believed to be involved with this and it increase with vigorous exercise and learning.

Dr. Mary Newport

Posted January 30, 2009 10:00 AM
Regarding whether the lauric acid may be able to kill the virus once in the tissues: My husband Steve has had recurrent fever blisters since he was a child; he once had an occurrence around on of his eyes, which made me think that perhaps there was a connection with AD, after which I happened upon Dr. Ruth Itzhaki's research. He has been on the coconut oil/MCT oil regimen for 8 months and had one very small fever blister about 5 months ago and none since. He used to have outbreaks every 2-3 weeks. This is not proof that it kills the virus in the tissue, however, there is research showing that monolaurin, which is a metabolite of lauric acid, and also monocaprin, a metabolite of one of the other MCTs, both dissolve the lipid capsule of viruses in the herpes family and also HIV and others.

Dr. Mary Newport

Posted January 30, 2009 10:31 AM
To address a few things said above, Axona has not received FDA approval as a treatment for AD, it has been given GRAS approval, "generally regarded as safe," which MCT oil has had for many years. I commend Dr. Henderson for having the insight to recognize that MCT oil could produce ketosis and potentially improve
people with AD. However, this insight occurred in 2000 or before and the first studies with very positive results in AD were completed by 2004, if not before. MCT oil has been available OTC for very many years. Why not broadcast far and wide that this can help people with AD and continue to work on a product that will make it more convenient to use? When coconut oil helped my husband (at first I did not know MCT was available OTC)I made it my mission to let people know, since no one else had taken on that task up to that point and potentially so many people could benefit, as my husband did. Since I wrote the article "What if There Was a Cure for AD and No One Knew, "in July 2008, with Dr. Veech's advise, we have added the oils at dinner and then lunch and experimented with various combinations of MCT oil and coconut oil. We have settled into a regimen of 20 ml (4 teaspoons)MCT plus 15 ml (3 teaspoons)CO, which he tolerates very well. A lot of it is used in our cooking. He appears to be retaining all of his improvements and continues to improve, albeit more gradually now. Steve's initial dramatic response was with coconut oil, so I am reluctant to stop including that in his regimen. When we measured ketone levels with MCT only, they peaked at 90 minutes and were completely gone by 3 hours, with coconut oil, they peaked at closer to 3 hours and hung around considerably longer. I felt that we could get the best of both oils by coombining them for the high levels and longer availability, with the goal of having ketones always available. The process of coming to this regimen took a number of weeks and experimentation. I don't have all of the answer to
whether to use MCT and or coconut oils. I doubt anyone knows the answer at present. For example, there is little research into exactly how lauric acid is metabolized with regard to how much is converted to ketones, etc. The biochemists involved in MCT and ketone research say it has not been completely worked out. There is research showing that metabolites of lauric acid (monolaurin) and capric acid
(monocaprin) dissolve the lipid capsule of the herpes simplex type I virus (and other viruses) that has been implicated in research by Dr. Ruth Itzhaki, as a possible etiology of AD for people with APOE4.
Regarding how much to use for your loved ones, my understanding is that the Accera studies were with one dose 20 gm MCT in the morning. I do not know what they are going to recommend as far as how much to
use, when it is available. Other than in forums, I haven't seen any marketing for it yet. Has anyone else??

Dr. Mary Newport

Posted June 04, 2009 07:03 AM
I posted this on www.thealzheimerspouse.com also. Steve has been taking coconut oil for over a year now and for about 10 months a mixture of coconut oil and MCT oil, just over 2 tablespoons three times a day. His MMSE and clock drawing improved immediately, his personality returned, he did not seem so “dazed and confused.” He says it was like a light switch came on. I have heard from a few that had a similar experience, but most seem to improve more gradually. He had a very significant hand tremor with eating and a jaw tremor when he would try to talk. He became more social, and responses more appropriate with conversation. His libido also returned shortly after he started the oil. Over the past ten months he had an improvement in his ADAS-COG scores of 9 points out of 75 and on the Activities of Daily Living a 14 point improvement out of 78 points. In spite of how much saturated fat he consumes (most of it is actually medium chain triglycerides and omega 3 fish oil), his cholesterol profile has steadily improved and has been within the normal range since at least August 2008 – on 5/14/09 his total cholesterol was 175 / HDL 68 (>40 nl) / LDL 93 (<130 nl) triglycerides 72 (<150 nl). Initially he gained weight when we added the fat to his diet, however, after cutting out some of the other fats and reducing his carbohydrate intake, he has lost most of the weight gain. Some of the other things we have seen gradually improve:
• His gait has become normal.
• He was unable to run for more than a year and can run again.
• He had a visual disturbance that prevented him from reading for about 1 1/2 years. He describes it as the words moving around erratically on the page. This has not happened for more than 6 months. He also feels that his reading comprehension has improved very recently. He recently relayed to me details of two articles he read from Scientific American a couple of hours later.
• He has a mild tremor that only appears if he is late getting his oil.
• He no longer feels depressed and believes that he has a future. He says he feels like he “got his life back."
• He is much less distractible and able to stay with a specific task, such as yard work or vacuuming.
• 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.
• 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.
• Within the past 2-3 months 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.
• 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. He is very pleased with his new job and enjoys the people he is working with.
• He had a habit of whistling the same 8 notes over and over (Johnny Cash “Because you’re mine, I walk the line” – made me bonkers!!) This has disappeared. He still whistles when he is happy but has a larger repertoire of songs now like he used to.
• He also used to have episodes for several years where he would break out in a sweat and have to lay down, sometimes several times a day – this has not happened for several months.

He is not "normal" by any stretch, but he is heading in the right direction, and, as several of you have also said, we will be more than happy to take any improvement!

I think consistency and patience are key in seeing improvement for those who are going to improve. It is like fuel. If the tank is empty the car isn’t going to run. If certain brain cells are unable to use glucose, they may be able to benefit from the alternative fuel (ketones). If the fuel isn’t available, the neuron won’t function normally. The brain is capable of making new neurons and therefore potentially doing some repair or making new connections.

For those who don't know about this, Dr. Richard Veech of the NIH in Rockville, Maryland is able to make a ketone ester in his lab, and has been studying the effect of ketones in mice and beginning to understand how this may happen. A paper is in progress about this. He has started human toxicity testing for his ketone, which will be able to produce much higher, controlled levels of ketones than coconut oil, MCT oil or Axona. He produces about 9-10 pounds of the ketone in his lab each week, but still lack the funding for a plant to produce it by the ton - if there is anyone out there who knows of a charitable source or other way to raise $15 million for production of Dr. Veech's ketone ester so that he can begin studies for Alzheimer's please contact me at preemiedoctor@aol.com! This is urgent for all of us and goes beyond Alzheimer's disease.


Dr. Mary Newport
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/1911048343?r=357100231#357100231

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Posted December 12, 2009 02:01 PM

Papers written by Beatrice Golomb, MD, who studies adverse effects of statins at UCSD are very enlightening. You can find her articles by googling her or email me and I can send them to you. She has reviewed the literature extensively and states that the only group that appears to benefit from taking statins with reduced rates of heart attack and related mortality are middle aged men up to age 65 who have elevated cholesterol and other risk factors for cardiac disease. She says women don't benefit at any age, and men and women over age 70 do not benefit (no decrease in mortality from heart disease) even if they have existing cardiac disease. She also says that the incidence of side effects is about 45% and for some people this involves affects on memory and cognition.
There was an article that got a lot of press claiming that people with dementia has higher levels of cholesterol at midlife: A Solomon, et.al., "Midlife serum cholesterol levels and increased risk of Alzheimer's and vascular dementia three decades later," Dementia and Geriatric Cognitive Disorders, 2009,28:75-80 If you read the complete article, the average total cholesterol level at midlife for people without dementia was 224, with AD 228, and with vascular dementia 226. Due to the number of people in the study, this tiny difference was considered statistically significant. I wonder how a difference of 4 points in cholesterol, which can fluctuate that much day to day, could in reality make the difference between dementia and not dementia three decades later? When the groups were looked at in terms of cholesterol levels < 200, 200-239, considered borderline, and high 240 or above, there was considerable overlap between the three groups. Of the people with AD, 23% fell into the < 200 range, and 40% in the borderline range, and 37% in the high range. Of people with vascular dementia, 23% had values < 200, 46% borderline and 31% high levels. Of the people without dementia, 27% fell into the <200 range, 41% in the borderline range, and 32% in the high range. Very interesting that people with vascular dementia and peole with no dementia had exactly the same rate of "high" total cholesterol levels. The authors did not have the results of HDL or LDL levels, since these were not measured typically at that point in time. They also did not have information about whether these people received "lipid lowering agents."
If anything I think this study shows that cholesterol may not have much of an impact on way or the other, even on the development of vascular dementia.
Another paper by J Tong, et.al, PNAS, March 31, 2009, demonstrates the importance of cholesterol in "membrane fusion," which is required for release of neurotransmitters at the synapse. They discuss that cholesterol makes up to 30-40% of the lipid in plasma and vesicle membranes and helps create the cell's shape, protecting it from being bent or deformed.

So why would we want to remove cholesterol from the brain without knowing how much we are removing and exactly what we are doing for better or worse by removing it. I believe that if we take statins we are leaving it to chance. Cholesterol is important in every cell membrane, in the structure that supports the brain, and is the precursor to a number of hormones, including the sex hormones and steroid hormones. Also, when we block production of cholesterol with a statin, it affects not only the cholesterol level (mostly LDL), but also the levels of these hormones and production of other substances in the same pathway such as HMG-CoA, and may deplete CoQ10. How many doctors put people on CoQ10 when they start them on a statin? Our doctor never mentioned it.
After everything I have read about cholesterol in the last year or so, we made a decision to take Steve off Zocor (which enters the brain and removes cholesterol from the brain)about six months ago. If anything, he is doing better now than six months ago. There is no way to know at this point whether taking him off has had anything to do with how he is doing now, since we have made other additions to his regimen in terms of supplements. The main things I see now is that he has no physical symptoms whatsoever, participates without hesitation in conversation, even in a group, is not depressed (and coming off anti-depressants also,)and feels like he has a future. He has had improvement in his short term and recent memory compared to 18 months ago, and often surprises me in that regard, although his memory is certainly not what it was ten or even five years ago. But overall, we are both in a better place with the improvements he has had since starting to take coconut oil in May 2008 and adding MCT oil in July 2008.


Dr. Mary Newport
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/458105142?r=437102672#437102672

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Posted August 17, 2010 06:18 PM to the Alz.org forum

This is yet another sad turn of events. Steve was in this study but we stopped in the winter due to several side effects; I believe he was on the actual drug for only about a month at that point. His hair started to grow out a very light gold color (one of the known effects that didn't bother us)and when we stopped it, the darker hair grew in again. He had a half inch white stripe work its way out to the tips of his hair! I no longer have any regrets that we pulled him out of the study.

I believe the worsening of AD in people who were on this drug supports infection as at least one important cause of Alzheimer's disease. One group has found that beta-amyloid kills microbes; they tested a number of bacteria, all of which were killed by beta-amyloid, and this group is now looking at viruses, such as herpes simplex, and other microbes (Soscia "The Alzheimer’s Disease-Associated Amyloid b-Protein Is an Antimicrobial Peptide" PLOS March 2010,Volume 5, Issue 3, e9505: www.plosone.org).

If a drug is used to suppress the production of beta-amyloid and it normally is part of the brain's defense against infection, then infection could spread more readily and potentially cause more extensive damage to brain tissue. Beta-amyloid may be more prevalent in people with AD because they have chronic, recurrent infections that are provoking this response. So the increase in amyloid may be the aftermath, no the cause of, the process that does cause AD.

Drs. Ruth Itzhaki and Mark Wozniak in the UK have done extensive work looking at the herpes simplex virus as a cause of AD (they have numerous papers on this from 2005 through 2009.) This virus causes fever blisters, can cause shingles (along with the chickenpox virus, a close relative), and also genital herpes. Herpes simplex lives within nerves and the nerves to the face around the mouth orignate deep in the brain. Most people carry this and other viruses by the time they reach old age, but they have found that people who are ApoE4+ are particularly likely to suffer recurrent episodes of fever blisters. these researchers have found this virus within about 90% of the beta-amyloid plaques in the autopsied brains they have looked at, which strongly suggests that beta-amyloid is there to defend the brain against it. They have also found in animals that the herpes virus increases production of beta-amyloid and also induces AD-like tau phosphorylation (production of tangles). They want to study whether suppression of herpes virus with anti-viral medication would be beneficial to people with AD, but have had trouble getting funding for this. Acyclovir, for example, is taken daily orally by many people to suppress the genital variety of herpes simplex, including woman who are pregnant, to try to prevent spread of the nfection to the newborn. Perhaps such a treatment could decrease the number and severity of outbreaks in the brain as well. Lysine (available OTC) is used to suppress herpes infections and the lauric acid (C:12) and capric acid (C:10)found in coconut oil kill herpes family of viruses by dissolving the lipid capsule around the virus.

It could also be that even though beta-amyloid is there to fight infection, it causes some of the damage as well; if you think about it, whenever there is inflammation, part of the body's defensive reaction to infection, there can be damage/scarring to the nearby tissue from the inflammation. The infectious agent is the cause of the whole process, but the body's defenses can also cause some collateral damage, in order to preserve the whole person.

I hope work by Itzhaki and others studying infection will be taken more seriously so that they can get the funding they need.


Dr. Mary Newport

If you don't try, there is no way in the world you will succeed.
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/610304534?r=170305534#170305534

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Updated: October 10, 2010
Inception: June 4, 2008