Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

  1.  
    Charlotte it goes great with peanut butter or jam. Anything that coconut would go with. I am going to order some MCT fuel over the Internet. I think it will have more variety of uses since it is emulsified. The MCT oil is also available over the Internet.
    • CommentAuthorCharlotte
    • CommentTimeJan 18th 2009
     
    A teaspoon really is not much is it? I had mine with peanut butter and could not even taste it. I sampled it by itself and it has a very light coconut flavor. Husband had his on toast with strawberry jam. How fast do I increase to get up to 3 teaspoons a day?
  2.  
    Just gradually keep adding a couple more times a day.
    • CommentAuthorandy*
    • CommentTimeJan 19th 2009
     
    I'm new at this posting stuff, but I will tell you how I am having get success with the coconut oil. I put a tsp. in each section of an ice cube tray and melt in micro, then
    add a small amount of melted choc.( my DH is diabetic) mix and pop in the freezer.
    When it is solid I dump them out into a baggy and refridgerate. You can add some
    reg. coconut or chopped nuts if you wish. It's really good and he remembers to eat
    3 a day. I even like it. You won't know until you try it!!!!!!
  3.  
    DH has chosen his clothes and dressed without assistance except for belt, for 3 days. I am very pleased.
  4.  
    Today I noticed him showing interest in TV shows and this evening he was following a old comedy sitcome and laughing.
    He hasn't done this for some time.
  5.  
    Imohr, that's wonderful news! I continue to notice improvements also. How much coconut/MCT oil are you giving? I had worked up to 1 and 1/2 Tbls. and he knew what day it was before looking at the calendar this morning. I think Dr. Newport is giving lots more than that and maybe Sunshyne is too.
  6.  
    I am wondering how to find out what would be the optimal dose. At what point does adding more oils cease to add effectiveness and just add more calories?
  7.  
    Dazed and Lori - I don't measure good but generally 1 T. mainly because I have found it difficult how to give it. Last night I had
    bread sticks and gave him the T. in a dish and he dipped the bread stick and liked to do that so I may try it that way and increase dosage. I think I will ad granulated garlic and onion to the oil. I don't know how much you can give but I
    am going to try and ramp up to 2T.

    He just came in fully dressed and wants me to go pick up breakfast at Mc. It is 7 here this morning.
  8.  
    I have just started DW on MCT oil. I'm giving 1 Tbsp twice a day (she had already been on the MCT Fuel with no problem). Last night I "mixed" it in applesauce, but it didn't mix well. This morning I put it on her English Muffins in place of butter. She seemed to like it. I'm not sure of any major change from the MCT Fuel. Will have to see what the oil does.
  9.  
    DH just watched 3 hours of the Inauguration with full attention to the festivities. So much different then 3 months ago.
    I hope others of you are noticing improvements.
  10.  
    lmohr, I am following your reports on your husband...I am fascinated.....I truly hope the improvements continue.....
    • CommentAuthorZibby*
    • CommentTimeJan 21st 2009
     
    I bought some yesterday and explained the purpose and use of it. "Nope; I don't want it; won't use it. I hate the taste of coconut so you might as well throw it in the garbage." I explained it doesn't have a strong coconut taste. Doesn't matter to him, and he fixes his own breakfast. I'll try using it to make cookies or put it in his veggies. I ate about 1/4 tsp by itself, and it tasted fine to me. Guess he's not "dysfunctional" enough to appreciate it's possible value yet.
    • CommentAuthorZibby*
    • CommentTimeJan 21st 2009
     
    Oh, the "some" is Nutiva organic unrefined cold-pressed extra virgin coconut oil.
  11.  
    Oh..sorry Zibby. Maybe you can just put it on his bread or in some food and don't say anything about. Sometimes less said the better. I used the MTC oil (no flavor) this evening in his chille and he didn't know it was in there. You couldn't do it for breakfast.
  12.  
    I've gone back to "mixing" the MCT oil with applesauce morning and night. Then I grind her pills into the applesauce and stir the whole mixture. The oil doesn't mix well, but she eats it all with no problems.
    • CommentAuthorZibby*
    • CommentTimeJan 21st 2009
     
    Yup, I think that's the way to go: put it in stuff and keep my mouth shut:)
  13.  
    My dh is too "with it" to eat applesauce with the oil in it. He would not like the oil floating on top. However he did
    like it in a bowl and dipping a breadstick in it.

    marsh - are you noticing any improvement?
  14.  
    lmohr, not that I can notice so far.
    • CommentAuthorSunshyne
    • CommentTimeJan 22nd 2009 edited
     
    Remember, please, that AD patients who do not carry the APOE4 allele were the ones who improved. Those who DID carry the allele did not decline as rapidly when on the Axona as those with the allele who did not receive Axona. So we cannot all hope to see improvement in our loved ones ... but that doesn't mean it isn't helping.

    Of course, it does depend on how much caprylic acid the ADLO is receiving, too.
    • CommentAuthorMawzy*
    • CommentTimeJan 22nd 2009
     
    The bottle of MCT Oil that I bought said to give it by body weight--140-190 lbs--1 T daily. etc. I give him 1 T a day mixed in his OJ. He asked what that was. I told him it was an oil to help improve his memory. His response? "Oh, okay. Do I have memory problems?"

    He drinks it right down with no problems. I have also added 1 fish oil gel cap and 1 Ginkgold. So far I have not seen any improvement. He's been using these 3 items for a little over a week.
  15.  
    I've worked up to 2 TBLS. Am I giving too much?
  16.  
    Since my observations are so subjective, I often wonder if I am just seeing what I want to see in improvement. However, one thing has happened this week that is a little more objective. For several years, whenever my husband was asked his age (even at the Dr. office) he would reply "39". I was always upset that he would joke around and not give the information requested until last spring when I realized that he had no clue as to how old he really was. For the past week he has been able to give his correct age each time I ask--79.
  17.  
    Lori - I think you are seeing various improvements. My husband is usually more focused now and almost always the past week dressing himself without help, using bigger unusual words and talking more in sentences. However he struggles for the correct word and forgets the rest of what he was going to say worse.

    Things are "spotty".

    Dazed - Sunshyne can answer better than me but I wouldn't worry about 2T. if I could figure out how to get it in his food so it doesn't float on top. I think I did manage 2T. today. My measurements follow the Chef's on TV. (Also, if it wasn't giving him diarrhea like some report}
    • CommentAuthorSunshyne
    • CommentTimeJan 23rd 2009 edited
     
    Dazed, the Accera folks tested 14 grams per day of emulsified caprylic acid. One would expect pretty much all of that to be turned into ketone bodies.

    Folks who are using MCT Fuel would give their spouses 5 Tablespoons to give the equivalent. Since this is emulsified, and is almost entirely caprylic and capric acids, the spouse would be producing pretty much the same level of ketone bodies. (Capric acid isn't quite as efficiently turned into ketone bodies, but it comes close.)

    If you're dosing your husband with MCT oil (unemulsified), roughly 1.5 Tablespoons would contain the same amount of MCT oil. However, not as much would be absorbed, digested, and metabolized, so the concentration of ketone bodies wouldn't be as high.

    Also, keep in mind that larger people would need more MCT oil to get the same concentration of ketone bodies in their blood, smaller would need a little less.

    For what it's worth, I give my husband ~2.5 T of Fuel plus ~3 T of oil per day. He doesn't always eat all the food that has the oil, so it's kind of hit or miss, how much he actuall consumes. I haven't noticed any problems, other than sometimes he complains that he's too full to finish his meal. (This is to be expected ... MCT oil is used to help lose weight, partially because it does make you feel full.)

    Now, FYI, the coconut oil doctor (who apparently has switched mostly to MCT oil) had gotten her husband up to 80 grams per day, the last I heard ... nearly six times what you're giving your husband.

    Also, I haven't a clue how Accera chose the 14 gram dose, and as far as I know, they haven't done any studies to determine whether this is the optimum dose for best efficacy, either. They might find out that more is better...
  18.  
    Hmmm...sounds like I don't have to worry about overdosing as long as there are no digestive problems. Gosh, Dr. Newport is giving 6 times what I'm giving!!! Sure don't want DH to lose any weight, though. He only weighs 145 lbs. I can't find the MCT fuel here but will try to order some on line. I want to continue giving some of the coconut oil also. I know we have to watch the saturated fat but he seemed to be more "with it" when we were giving that. Just need to know how much. Thanks, Sunshyne.
    • CommentAuthordivvi*
    • CommentTimeJan 23rd 2009
     
    i ordered the MCT oil today as well along with saw palmetto in liquid form for prostate issues. if any of your spouses suffer BHP (enlarged prostate) i fully suggest you try this natural form of med -think flomax! my brother suggested it (pharmacist) instead of scripted med and its working nicely! he also says its now being used and could help baldness! haha..we'll see we dont have that issue yet! i also will give the oil 1teasp plus 1 teap coco oil and will be observant. the coco oil in my opinion is defiantely doing some productive work even with a very low dose /day. today DH read the sign off the bank and spelled out each letter driving by. knowing just the letters is improvement again.my grandaughter goes ballistic when he does stuff now..haha..i find it quite intriguing this coconut oil. everyone seems to get some min-mod improvements! divvi
  19.  
    I will probably have to put this onto several different text boxes of comments, so bear with me: Part I
    I found your message board while doing a search. I am the doctor you keep talking about and I would love to answer some of your questions. Going back to some of your very early discussions, I would like to say that it was pure chance that I happened upon a news release about Ketasyn (now called Axona) while researching two other clinical trial drugs that Steve was screening for, and wanting to find out more, located their patent application. I don't claim to be an expert in biochemistry, but this was part of my medical school training and I also had experience with using MCT oil in the preemies in the late 70's and early 80's, so all of this made sense to me as I read through it. From what I read about the results of their studies, I did not expect Steve, with his APOE4 allele to improve so dramatically, and yet he did. As I said in the article, I did not know that MCT oil was available OTC at that time. I actually called Stepan Company who manufactures the C8 used in the Accera studies to see if I could get some and found out that the smallest quantity they would sell it in was a 55 gallon barrel x 16 barrels!! They did however, send me a sample.
  20.  
    I will probably have to add this in several sections so bear with me! Part I: found your message board while doing a search. I am the doctor you keep talking about and I would love to answer some of your questions. Going back to some of your very early discussions, I would like to say that it was pure chance that I happened upon a news release about Ketasyn (now called Axona) while researching two other clinical trial drugs that Steve was screening for, and wanting to find out more, located their patent application. I don't claim to be an expert in biochemistry, but this was part of my medical school training and I also had experience with using MCT oil in the preemies in the late 70's and early 80's, so all of this made sense to me as I read through it. From what I read about the results of their studies, I did not expect Steve, with his APOE4 allele to improve so dramatically, and yet he did. As I said in the article, I did not know that MCT oil was available OTC at that time. I actually called Stepan Company who manufactures the C8 used in the Accera studies to see if I could get some and found out that the smallest quantity they would sell it in was a 55 gallon barrel x 16 barrels!! They did however, send me a sample.
  21.  
    Part II: So we did experiment with it. I also have never claimed to make this "discovery." Dr. Henderson certainly deserves the credit for having the insight to recognize that MCTs could provide a level of ketones that could help persons with neurodegenerative diseases. However, my "issue" is that this insight occurred during or before the year 2000 when the first patent application was filed for this product, and by 2004, the first studies were completed, and yet this information wasn't released to the general public, so that people could use MCT oil which is very easy to purchase by the quart. In 2004 my husband was still working and had a normal MRI. Before starting the coconut oil in May 2008, his MRI showed considerable atrophy (moderate to severe in the hippocampus and amygdala) and hydrocephalus related to atrophy. I wonder where we would be today, if Dr. Henderson had made the results of his studies public. I have been told by a reseacher who participated in these studies with Ketasyn that the people who participated did not get to continue using Ketasyn when the study was over. Can you imagine having that kind of improvement and then having the rug pulled out from under you??
  22.  
    Part III:When Steve improved so dramatically, I felt like I was living in a parallel universe, in which I knew something that millions of other people didn't, and that these people needed this information as well. I made it my mission to inform as many people as possible and so I wrote the article and sent it to every "big-wig" I could think of. It was very early into Steve's improvement and I can understand that these people would be skeptical and feel it was premature, however, all I asked them to do was to investigate this with whatever medical personnel they had access to. In my very first version of the article I did say that coconut oil was something people could try until Ketasyn or Dr. Veech's ketones become available. I was then told that Nestle may have bought out Accera and that their product is going to require a prescription and is going to be very expensive, which will not make it accessible to people in the earliest stages or for prevention, or for those who do not have the money to purchase it on a regular basis. Dr. Veech is working to reduce the cost of making his ketones so that they will be inexpensive, on the order of penicillin or insulin. I am sure they will require a prescription, since the dosage will need to be carefully controlled. The "pretty" version of my article was put together for the International Conference on Alzheimer's Disease in Chicago this past July. I saw the opportunity to get this information to the 5000 physicians and researchers from around the world that were expected to attend. I submitted the article and was initially approved to pay for a table to distribute this information, however, a few days before the conference I was informed by email that my application had been reviewed again and denied. I fought it, but lost. It turns out that my table would have been directly across from the Accera exhibit. We attended the conference anyway and I spoke with as many researchers as I could about ketones to try to stimulate research. The Accera exhibit provided written literature but none of it mentioned that their "novel therapy" was MCT oil. I had to pry it out of their sales rep, who was even evasive about exactly what produced their outstanding results. They had the reference for the 2008 article by Dr. Henderson, but no copies of the article available on-site. The Alzheimer's Association has advised me that they do not want to promote anything for their members that has not had extensive clinical testing. MCT oil has had this testing (as I pointed out to them) and yet they still are unwilling to make their members aware of it.
  23.  
    Part IV:Since July we have experimented with various combinations of MCT oil and coconut oil. We found that Steve had higher levels of ketones with MCT oil but they were gone by 3 hours, whereas with coconut oil, the levels were lower but hung around a lot longer. We also found that if he got up to 30 ml (2 tablespoons) of MCT oil, that he had unpredictable and rather explosive diarrhea. So after much trial and error we settled into giving him a combination of 20 ml (4 teaspoons) of MCT oil plus 15 ml (3 teaspoons) of coconut oil each three times a day with his meals and he tolerates this very well. We have kept the coconut oil because of the other benefits of the lauric acid, including its microbicidal activity. In early August I came across research by Dr. Ruth Itzhaki regarding a connection between the virus that causes fever blisters and AD in people with the APOE4 allele - she has found evidence of the herpes simplex type I DNA in the beta amyloid plaques. It just so happens that the C10 and C12 (lauric acid) melt the lipid capsule of viruses of the herpes family (and HIV). Steve has been plagued with fever blisters for his entire life and he has had none now for at least 5 months. The nerves involved with fever blisters originat deep in the brain near the hippocampus, so it makes perfect sense to me that, since the virus lies dormant in the nerve, when it erupts it might erupt not only on the lip but also anywhere along the nerve pathway. So we are keeping the coconut oil along with the MCT oil. I have spent considerable time talking with Dr. Veech and also Dr. VanItallie, and the latter suggested that there could even by other factors in the coconut oil that may have helped Steve improve. I have lately been mixing 16 ounces of MCT oil (C8 and C10) with 12 ounces of coconut oil in a mason jar. It stays liquid on the counter and makes it much easier to measure out. By the way, to answer another question, Steve has been on Zocor for at least five years, started when his total cholesterol was about 278. His total did come down to < 200, however, his LDL did not come down into the normal range until after he began taking the coconut oil. He had a fasting profile done when he was taking at least 6 tablespoons of coconut oil per day several months after starting the oil; his total choleterol was 194, HDL 77 (!!), LDL 99 and triglycerides were 70. We have a website now www.coconutketones.com to which I hope to add the scientific articles related to ketones. The site is very messy right now, so I apologize. I will try to check in here from time to time.
    If any of you have done clock studies before and after starting the oil, or have any other test data, please contact me about that and I will let you know how to get them to me. Dr. Veech needs this kind of documentation to further his quest in getting funding to do clinical testing with his ketones. You can contact me through ketones08@aol.com.
    • CommentAuthordivvi*
    • CommentTimeJan 28th 2009
     
    Marynewport, let me be one of the first to welcome you! we love your input and thank you so much for your informative post. many of us are using and super interested in your studies. Sunshyne, our resident scientist has posted much info with regards to the MCT and the studies you are posting here. Its so exciting that you found our group. you will find us very accomodating and if you care to read some of the posting here will find that for spouses with AD there is no better website out there. joan has done a fab job of getting us a place to share our emotions and experiences. thanks again, i am sure we would all love to see you posting about your journey with AD. Divvi/TX
  24.  
    Marynewport, so glad you found this site and so glad we found you. The people here are wonderful and yes, many of us are already using the MCT and coconut oil and have noticed improvement. As divvi said, our resident scientist, Sunshyne, has been on top of this and has given us valuable information obtained by her research. It was interesting to know that the ketones from MCT oil do not last as long as with coconut oil because I have noticed DH does better on coconut oil. That's probably the reason. I'm using both right now.

    Welcome to our family here. Others will be here shortly and Joan will welcome you personally. She is wonderful.
    • CommentAuthorAdmin
    • CommentTimeJan 29th 2009
     
    Marynewport,

    Welcome to my website. I am pleased that you found us, and took the time to write and answer the questions posed. I thank you and am grateful for all of your valuable information. As you can see, this topic has received a tremendous amount of interest - 80 comments MORE than "The Driving Issue", and I didn't think anything could surpass that one!

    I am guessing that when you mention "Steve", you are referring to your own husband. If that is the case, I hope you will take the time to log onto the home page of my website - www.thealzheimerspouse.com. Although there are a wealth of resources there, I would suggest clicking on "previous blogs", and scrolling through the topics, most of which deal with the emotional issues involved in coping with a spouse with Alzheimer's Disease.

    Welcome and thank you.

    joang
  25.  
    Marynewport - I would like to welcome you to this site also. This site is wonderful and I am one of those who have been using the coconut oil since I first heard your report. I also noticed remarkable improvement within days of starting the oil mainly in partially doing the clock drawing which mimiced the one your husband drawed.

    I also think I see more improvement with the coconut oil over the MCT oil and am using both. I am giving 1 T. coconut oil and or 1 T. MCT oil. Problem being the way to dispense.

    I hope you will continue with your experiments and keep us updated on your progress.
    • CommentAuthorkathi37*
    • CommentTimeJan 29th 2009
     
    G started on the MCT oil a couple of weeks ago, and just started on the fuel. I can't say I have seem any change and he doesn't feel any change. Perhaps too early for any noticable difference.
  26.  
    I ordered MCT oil on-line from "AllStarHealth.com". It came in a glass bottle, well protected, with no problem (except that due to the extremely cold weather it had congealed). I have gotten Coconut oil and MCT Fuel from our local healthfood store. Right now I'm using only the MCT oil and have not noticed any changes in DW.
    • CommentAuthorGuitarGuy
    • CommentTimeJan 29th 2009 edited
     
    We have been using MCT oil for the past 5 weeks but we had started on the Coconut oil prior to that for about 5 weeks. I don't have any hard data like drawing the clock, but I do notice that she is more active and talkative.

    We had a birthday party at my Mother-in-Law's this past Sunday and my sister-in-law emailed me the following observations:

    Nephew and neice:
    "...BOTH mentioned how much better she seemed to be this weekend at Nana's house."

    Sister-In-Law:

    "Now she seems to look for a word, and once she has it, she is able to continue the conversation, whereas before, she got totally confused! She is a lot better whenever I have seen her lately!"

    I also noticed a difference between taking the MCT OIL and the Coconut. I thought it was just me. So maybe a combo of both might be good.

    The interesting thing here is my sister-in-law doesn't know about the MCT and Coconut Oil, she attributes this to Aricept and Namenda. I told her about the Coconut Oil but she.. ah.. what's the technical term.. she poo-pooed it!
  27.  
    Typical reaction GuitarGuy. Wouldn't you have the same if you had not seen the difference yourself? It does sound
    like nonsense, (coconut oil) doesn't it? But I know what we have seen here in our household the children agree.
    • CommentAuthorGuitarGuy
    • CommentTimeJan 29th 2009
     
    No, I think I would be curious.

    I don't mind people being skeptical, I mind when they are dismissive and disinterested.
  28.  
    I think for most people, doctors included, their initial reaction is that it just couldn't be something so simple, so they don't bother to read through the information. But the science is so basic, that if people take the time to read and digest the information, it makes sense that it is possible. When I read through the patent application for Ketasyn. it actually rung a bell when they discussed the metabolism of MCT to ketones in the liver which I had learned in my medical school biochemistry class around 1974!! It is just that in this country, we don't normally eat the kinds of foods that contain MCTs. You have probably all heard about the Mediterranean diet. I can't help but think that it is not so much the olive oil but the goat's milk and cheeses that they eat in that part of the world that is making the difference with regard to longevity. From what I have read, about 10% of the fat in goat's milk is MCT, very close to human breast milk in that regard.
    Steve is my husband's name to answer one question.
    By the way, if any of you know someone suffering from any of the following, the MCT and/or coconut oil could help because there is a problem with decreased glucose uptake in brain cells or, in the case of diabetes I or II, other cells in the body: Parkinson's, Multiple sclerosis, Huntington's chorea, frontotemporal dementia, ALS/ Lou Gehrig's disease, traumatic brain injury and stroke (transient problem with glucose uptake related to lack of oxygen,) Duchenne muscular dystrophy, Niemann Pick type C, Cushing's syndrome, anyone taking long or repeated courses of steroids, such as prednisone, Down's syndrome - these children will all develop AD if they live to their 30-40's - they have an extra copy of the chromosome that contains some genes related to AD; some children with autism.
    • CommentAuthorSunshyne
    • CommentTimeJan 30th 2009 edited
     
    Just to clarify a few points:

    (1) When developing a treatment for a disease, one has two choices, either developing it as a drug, or developing it as a medical food. Period. You can market MCT oil as a nutrient supplement WITHOUT MAKING ANY CLAIMS AS TO ITS BENEFIT, but you can NOT market it as a treatment for a disease.

    The regulatory issues for drugs and medical foods differ. Medical foods are, by definition, "a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation."

    - All of the ingredients of a medical food must have GRAS (Generally Recognized As Safe) status. (A few ingredients have been specifically permitted by FDA as Medical Food ingredients, e.g., folic acid.)

    - Because all of the ingredients in medical foods have GRAS status, a medical food does not have to go through the same premarket approval process as new drugs -- medical foods have already gone through "Phase I" trials, as it were.

    - Medical foods can only be made available by prescription. The reason is simple: the FDA points out, and quite rightly, that patients for which medical foods are intended are a vulnerable population. Even foods which have GRAS status may still pose a health risk to such a population, since the medical food is known to alter the physical status of the patient. Accordingly, the FDA contends that a treatment intended to modify the health of the patient should ONLY be administered under the direct supervision of a doctor, hence the requirement for prescription-only status.

    - Claims for the medical food have to be supported by solid laboratory and clinical data. Although a medical food can be marketed without receiving approval in advance, full compliance with the regulations is required before marketing the product. If a company markets its product is a medical food, the FDA can and will get involved at some point. Intelligent manufacturers therefore voluntarily seek approval in advance -- they do not want to risk investing their time and money developing and marketing a product as a medical food only to have the FDA evaluate their claims, find them inadequate, and force the removal of the product from the market. Accera has gone through the clinical trial and FDA approval process in advance.

    - Medical foods can only be marketed for the management of a specific disease. That is, one cannot test a medical food for its efficacy in treating Alzheimer's, and then market it as a treatment for Parkinson's. Solid laboratory and clinical data that demonstrate efficacy against Parkinson's are required.

    Accera followed the requirements both of the law, and of sound scientific principles.

    And, I should note, that by developing Axona as a medical food rather than a drug, they actually ensured the cost to the patient would be lower, not higher.


    (2) Per Dr Newport, the Alzheimer's Association advised her that they do not want to promote anything for their members that has not had extensive clinical testing. MCT oil has NOT had this testing.

    Accera tested an emulsified formulation containing caprylic acid (among other things), not MCT oil, and most certainly not coconut oil.

    It would be very irresponsible for the Association to support Dr Newport's activities. Very.
    • CommentAuthorSunshyne
    • CommentTimeJan 30th 2009
     
    (3) Accera most certainly did release their information to the public, as soon as they were free to do so. They published a very extensive paper on the hypotheses behind Axona in the open literature in 2004. They published the results of their Phase IIa clinical trials in the open literature in 2004. They presented their results in scientific symposia. They published another paper on ketogenic diets in 2005. They published two papers on studies conducted on animal models. They published another paper on ketone bodies in 2008. They did not complete the Phase IIb clinical trials until quite recently. They presented those results in scientific symposia long before it was possible to get a paper through the publication process (which does not exactly take place overnight, as those of us who have published in peer-reviewed journals can attest).

    They have every right to solidify their patent position before publishing their data. Every last pharmaceutical company and every last biotech company does the same thing. It is beyond absurd to try to paint Accera as having done something reprehensible by filing patent applications first. By patent law, if the information is in the public domain prior to filing a patent application, one cannot obtain (or defend) a patent.


    (4) Accera was a tiny company, with relatively trivial funding from outside investors, for most of its history (until November, 2008, to be precise).

    Henderson and his friends and family paid for the Phase IIa clinical trial out of their own pockets.

    I would suggest that we be profoundly grateful that they did that, rather than vilifying them for not having the money available to provide Ketasyn to trial participants afterwards.

    Not to mention, even Big Pharma companies, which rake in billions in profits, often don't continue to provide INDs to trial participants after a trial is concluded. The data from the trial hasn't been thoroughly evaluated by the company yet, let alone the FDA, the IND hasn't been approved, and the patients are no longer under the medical supervision of the Big Pharma company. Think of the liability issues involved ... it's enough to make one ill.

    Accera has had to decide every step of the way where best to put what little money they had, or they would have gone belly up long ago. And since I've run my own biotech company, BOY do I know what kind of decisions they had to make. For example, why should they have paid for the publishing and shipping costs needed to hand out copies of a lengthy and highly technical paper at the symposium, when the vast majority of the people there could simply download it for free from their computers? Accera had no way of knowing that very many people would even want a copy, because most scientists don't want to bother carting something home when they could download it at home. And those who couldn't download it at home in all likelihood wouldn't have understood the paper, anyway.

    The handout should not have told people that Accera's therapy was MCT oil, since it isn't. And if Accera's PR people felt that it was not a good idea to get too technical in a handout intended for the general public, they were probably right. I've made that mistake and been lectured on that subject dozens of times.
    • CommentAuthorSunshyne
    • CommentTimeJan 30th 2009
     
    (5) There is absolutely nothing "simple" about the science underlying fatty acid metabolism and the impact of ketone bodies on the brain. To date, we have barely scratched the surface in our attempts to understand it.

    The effects of raising serum ketone body concentrations are many and complex. Studies on cell preparations, tissue cultures, and animal models show that raising the ketone body level not only causes a notable improvement in mitochondrial function, but also a decrease in the expression of apoptotic and inflammatory mediators, and an increase in the activity of neurotrophic factors.

    Raising serum ketone body concentrations for an extended period of time can actually cause a dramatic change in gene expression.

    Ketone bodies are not simply an alternate source of energy.

    On top of that, changing other components in the diet can have a significant and complicated impact on fat metabolism and storage -- there's nothing simple about that, either, as I can attest after having slogged through hundreds of papers on the subject.

    And, last but most certainly not least, coconut oil is 80-90% saturated fat, which is a very well-established health risk -- as our very own medical doctor Sandy D pointed out (causing me untold grief trying to prove -- and failing miserably -- that coconut oil is "good" for you, as the coconut oil proponents claim.) Dozens upon dozens of studies have shown that the saturated fats found in coconut oil pose a significant cardiovascular health risk via a number of diverse mechanisms. Many of these studies actually used coconut oil itself as the source of the saturated fats, since it contains such high levels of them.

    Coconut oil can unquestionably raise the cholesterol levels in many people -- and the responses of different people can differ dramatically, depending on heritage (genetics), gender, age, and health, among other factors, even if the diet is the same. And if something else in the diet is changed, even the same person can have a different response to coconut oil.

    There is growing evidence that high cholesterol may play a role in the development of AD, and possibly play a role the course of the disease. High cholesterol is a pretty well-established risk factor for developing AD. Whether or not statin use can minimize the risk is still controversial, although several very recent studies concluded that it can.

    There have been no fewer than nine clinical trials studying whether statins can help slow the progression of AD, several of which are still under way.

    So it strikes me as being very unwise to feed high levels of coconut oil to an AD patient, unless and until there have actually been well-designed clinical trials -- double-blind, placebo-controlled -- that show otherwise.
  29.  
    Thank you Ms. Sunshyne - very well done!
    •  
      CommentAuthorfolly*
    • CommentTimeJan 30th 2009
     
    Sunshyne, now please tell us what you really think. <ggg>

    Seriously, I wish to reiterate what others have said in thanking you for the time and effort you put into keeping us well-informed. I appreciate it very much.
    • CommentAuthorGuitarGuy
    • CommentTimeJan 30th 2009
     
    I'd like some clarification from everyone.

    Are you using MCT or Coconut Oil or both? How are you dosing it and at what times?


    Here is what we are doing:

    MCT OIL

    Morning - 2 Tablespoons
    Afternoon - 1 Tablespoon
    Evening - 1 Tablespoon


    A recap of recipes would be appreciated. :>)
  30.  
    At this point I am giving MCT Oil - 1 Tablespoon morning and evening. I might try increasing it. She tolerates it well, but I don't see any improvement.
    • CommentAuthorSunshyne
    • CommentTimeJan 30th 2009
     
    Marsh, do you know if your wife carries the APOE4 allele?