Update about Steve, Greece, the ketone ester, IVIG

I have been delinquent in keeping up with this blog the past few months and must apologize. There are not enough hours in the day!

Our trip to Greece was quite an adventure - our younger 24 year old daughter Joanna came with us to stay with Steve while I attended some of the meetings at the conference. My presentation went very well and was well received. There were researchers and doctors from around the world, so I am hopeful this will get the message out to many more. Steve held up amazingly well. I took him by the hand when getting off and on public transportation to make sure we didn't lose each other. We got to see some wonderful sites in Athens, London and NYC, but in the end we were all very happy to be home.

This May 21 will mark two years since Steve started taking coconut oil. He had many improvements, some immediate and others more gradual that became obvious over several months or even longer. In many respects he is still doing better than two or even three years ago. None of the physical symptoms or visual disturbance have returned. His has retained many memories of events that have taken place in the last year or longer. He continues to volunteer in the warehouse at the hospital where I work, putting stickers on supplies and moving boxes. He has also gotten his riding lawn mower out recently several times to cut the grass and had no trouble working it. For those who don't know, there are several controls that need to be operated simultaneously to get it running. There is no need to cut grass in our area from November to March, so I was biting my nails wondering whether he would remember how to operate the tractor this year and, alas, he does. On the other hand, we have seen some new problems since the last update. He has had setbacks when he has an illness, with more confusion. This has been most obvious to me when he has a fever blister. I always worry that "this is it," but he manages to bounce back, although not always completely. He has developed a problem in recent months at times with understanding the relationship of where we live to where the rest of his family lives. Usually after I explain this to him, he gets it. I do believe that overall, the use of coconut oil/MCT oil has taken us back in time at least two years and in many respects even longer. I don't know if we will beat it, but we have at least gotten a reprieve from this disease.

A pilot study for Parkinson's disease, using Dr. Veech's ketone ester, will soon begin. since the symptoms of this disease are more consistent from person to person and many are measurable physicla symptoms, he believes they will be able to know within one month if the ketone ester is effective. Clinical trials for Alzheimer's typically last 12-18 months or longer, due to the nature of the disease. We can be hopeful that if the results of the Parkinson's study are positive that more funding will be forthcoming for producing and studying the ketone ester.

Another promising treatment is IVIG (Gammagard and other brands). A pilot study for Gammagard was recently completed showing that there was no worsening of brain scans and there was improved mental function in people with AD over an 18 month period. IVIG has been used for people with immune deficiency for decades. It is pooled antibodies to many different types of infection from 100s of people and is given intravenously usually every two weeks. The company believes that it works by removing beta-amyloid plaque. Another possibility is that it controls a chronic or recurrent infection in the brain, such as the herpes simplex virus type 1 that causes fever blisters - work has been done by Dr. Ruth Itzhaki and others in England showing that this virus is present in the brains, and even within all of the beta-amyloid plaques they have looked at, of people with Alzheimer's who are APOE4+. The virus has also been shown to cause this plaque and also the classic tangles to form. For those who want to screen for the study look at www.clinicaltrials.gov and so a search for Alzheimer's and IVIG. There will be a list of centers who are recruiting now for the IVIG clinical trials.