My wife started to take Axona today. She hated it. Tastes awful she said.
Then she started with "Why do I need this?", "I'm not loco am I", and a litany of those kinds of questions and concerns that finally ended with her getting very upset, crying etc...
I don't know how I can make this more palatable for her. Anyone trying this yet? And negative 'taste' reactions? She also hated the MCT FUEL as well. I'm think maybe I can mix this with something, but I have come up with anything yet.
Does she like yogurt? It has a strong enough flavor it may overpower the Azona taste. Or try pudding, or some other stronger flavored food. My sister takes powdered MSM which taste horrible so she pours it on top, takes a spoonful of yogurt to eat it all, then follows with yogurt which quickly gets rid of the bad taste.
Guitar Guy I started my dh on the Axona last week for about 5 days and stopped the MCT oil. On Sat. and Sun. he had those mycalonic jerks real bad and complained of dizzyness and slept most of the day (sleeping is not unusual but the jerks were). I stopped the Axona and called his Neuro Mon. and he agreed I should stop the Axona and see how he did. He has not had any of the jerks since. I don't know if it was the Axona or if he was going to have the jerks anyway but since we were doing pretty good on the MCT oil I am going to go back with it and the coconut oil at this point.
I tasted it and it has very little taste. I put it in one of those new plastic food storage cups with the screw-on lids along with his Miralax in his cranberry juice and shook it until disolved and gave him a straw.You could also use a pint mason jar. I used about 1 cup of juice. He never complained after I told him it was for his memory.
I mix about three heaping teaspoons of MCT Fuel with about four ounces of my DW's orange juice, and she often comments about how good it tastes. I also sometimes mix it with prune juice instead and she seems to like that also. I actually tasted the prune juice mix once and it tasted more like OJ than prune juice, but not too bad. We're just finishing up our first one quart bottle of MCT Oil, which I usually add (one soup spoon, which is about 1 1/2 tablespoons)to her tossed salad along with just enough salad dressing to give it a little taste. Never any problem getting her to take whatever pills I put in front of her -- and it's a bunch!
I'm going to try adding it to some things like yogurt and see how she does with that. Thanks for the suggestions guys. I'm sure I'll hit on something that will not make her go 'blaahhhkkk!
Sunshyne - Thank you for ALL the info you so patiently entered here about ALL ~ I am hoping that starting my DH on the MCT Fuel will help.
Thank you to ALL who posted how their loved ones are doing on whatever you are giving them (coconut oil, MCT oil, MCT Fuel, Axona)...This helps so much and gives me hope to "try" and see if this will help my DH.
I have not been able to check the site in so so long...my days seem to be filled with trying to stay afloat and now nites are getting a little harder to get my hubby to stay in bed. He had a seizure in late February and was put on a seizure med, Keppra, and since then, he seems more 'negative' than usual...more no no no and more of the "busy-ness" of moving stuff around like so many of you experience, only it seems more magnified now. Just an array of busy-ness all the time ~
BUT, very thankful that I was able to get an hour or so tonite to check the site & again, THANK SO MUCH to ALL who post and share here...you have no idea how much it helps!!
We've missed you, natsmom. Sorry your life is getting harder. Is your DH on something to help with depression? A small dose of Cymbalta helped with my DH's negative attitude and depression. Check in whenever you can. We're here for you.
swarfmaker, thank you for posting. I too, have seen improvements with the coconut oil and MCT oil. Sort of a swiss cheese effect. Last summer we didn't think dh would live until Christmas and now he is much improved from last summer. Like you, I don't expect cure, but improvements in day to day living is welcome for as long as it will last. Do you give cinnamon capsuls or the powder?
I have just started my wife on Axona (she has been on MCT oil for a couple of months). After her first Axona yesterday, taken before breakfast, she complained of her stomach hurting. Today I gave it to her after she had eaten her breakfast, and again she complained of her stomach hurting. This was relieved by having a very soupy BM. Has anyone else experienced this? I decided today to start her on daily immodium to see if this would stop the soupy BMs.
We are having no jerks here. marsh my ADLO HAD the SAME PROBLEM I cook her a breakfast of oatmeal (steel cut) and add flax seeds and walnuts and bananna chips for long energy and have her eat that with soy milk before Axona dose (4 oz h20 with Axona shake and have her drink it immediately) I Give her 1 dan active yogurt AFTER AXONA and she also tried it before Axona but said after is better. She says it makes the tunny ache go away and trust me she does not TOLERATE pain at all!
i gave one tesp of mct oil and that was it. first dose, last dose! diarreha 2days straight:) ugh--its a nogo for us. coconut oil only. axona wouldnt try at this point-some folks just cant tolerate some of this stuff-divvi
I just had white chips on hand so I tried the same and he is not very enthusiastic so I am continuing putting MCT or coconut oil on salad, cereal, spaghetti and like and he doesn't mind. I just do 1 T. a day.
If anyone wants to try the Axona I will send you 5 packets to try. That way you won't buy a whole box and if it doesn't work be out a lot of money. My e-mail is in my profile and I would need your mailing address. Lois
I, also, could give away some Axona. I tried it on DW three days in a row, and each day she complained of severe stomach ache. Today I switched to MCT oil, and she has been feeling fine. I'm not going to try the Axona again.
My DH must have a stomach of iron. Axona hasn't bothered him at all and I do notice an improvement since he's been taking it. The old saying again.....if you've seen one Ad patient, you seen one AD patient.
I wonder if the problems some people are having with Axona are because the initial dose is too big. I've been starting to use the MCT oil myself, and finally today, after 5 days, I did not have a slightly upset stomach after taking it. I wonder if the spouses would tolerate the Axona if you tried giving 1/4 dose, and gradually increasing it. It could be that just like the MCT and coconut oil, some people have to build up a tolerance.
By the way, I mentioned the MCT oil to a knowledgeable and health-conscious person. She said that she had tried coconut oil several years ago, liked how she felt while taking it but got so sick of the taste that now she can't even look at a product that says "coconut oil" on the label without feeling sick. LOL
i am very interested in all these for my husband. however the gastro problems worry me as he had trouble with aricept and has only gradually been able to tolerate 5 mg. when his doc would really like, i think, to have him on 10 mg. i want to talk with his dr about axona but in the meantime am thinking of trying something over the counter. Would some please explain to me the difference in MCT oil and MCT fuel? also the benefits of these as opposed to cocount oil.
thanks, swarfmaker for that helpful info. i am leaning toward starting with coconut oil and maybe some other coconut products and see how that goes. Another discusssion about coconut oil recipes leads me to believe that i can substitute coconut oil for other oil in cooking and and as he loves sweets that also opens up many other options.
My DH has been on Axona for nearly a month. Doctor said we may see improvement in about 45 days, but I can already see a difference in several ways. I think I posted some time ago that if he ever woke up in the morning and knew what day it was without asking me, I would know he was better. That has happened! Not just once but every morning. I will post more after his next appointment and testing in June. I feel better about giving Axona than the oils. It has extra healthy protein in addition to the oils and different amounts have been given to find the right dosing. Also I'm a little concerned about the saturated fat in coconut oil. Of course if they are way far along in the disease, some saturdated fat probably wouldn't matter.
After reading many of the comments about coconut oil and MCT oil I went to our local health food store. I got some "Extra Virgin Organic Coconut Oil." Don't know how much to start out with but the label says to use 1TBSP 3x per day. Also, does it make a difference if it is extra virgin or just the regular, cheaper one? I also asked about MCT oil which they didn't know anything about, but when I mentioned Caprylic Acid they showed me the Capricin tablets which has 400 mg caprilic Acid per capsule (Says to take 3 capsules per day). I don't know if this will do the same as MCT. Has anybody else tried the capricin capsules? Would it have the same effect as the MCT oil? I bought a small bottle but if it works I can get a discount price on a larger bottle.
I found out from my researching that aricept and galantamine causes the stomach to produce more acid thus the reason many have more acid problems. When I mentioned this to the doctor a couple weeks ago, he said he would prescribe a stronger anti-acid than he was taken. I am giving him extra strength Ranitidine 150 mg. which is the same as Zantac. We never did receive the Rx from the VA which is fine since I had just bought a good supply at Costco. Anyway, it sees to be doing the trick - no acid reflex. Just hope it is not masking problems created by the galantamine since he had 6 esophagus ulcers back in the 90s.
Swarfmaker - Wal-Mart changed to their own brand of coconut oil: changed from 16 oz to 12 oz and raised the price to almost $10. I went to the cooking section and found 31 oz of non-hydogenated coconut oil for $5.28.
Had coconut oil everywhere Sunday evening. I forgot about it being where the sun would hit it (we have sun so rarely). Art went to open the jar, tilting it and we had coconut oil everywhere. Left a nice shine on my Corian counter!
A year or two ago I was watching a program with a man on there talking about cholesterol. He was saying even with the widespread use of statin drugs and lowering cholesterol, heart disease is still on the rise in this country. There are cultures in areas of the world with high cholesterol yet they have low heart disease. He believes heart disease has more to it than high cholesterol. True, some people have a problem with cholesterol so may need to avoid coconut oil, but for others it wil not . As with anything, it has to be taken on an individual decision. And then, depending on where your spouse is in the disease, it may not be of concern.
Several years ago I was taking coconut oil, I don't remember why, but it raised my cholesterol levels by almost a 100 points. I too have read about cholesterol not being as bad a we have been told. When I discontinued the coconut oil, the levels came back down although it took a while.
I have somewhere in my files a copy of a study done in Europe and reported in Lancet. It was a 5 year study of elderly women, average age 82. They tested cholesterol levels and overall mortality rates. The mortality rate was lowest in those with a cholesterol level of 272. At 350, they were 1.8 times more likely to have died. At 150, they were 5.2 times more likely to have died. So I'm not as concerned as my Dr. would like about my elevated cholesterol.
In case anyone is interested, I'm a geriatrician and am starting to blog. I would love to be a resource to my own patients and families and others as well. Here's my take on Axona: http://thegeriatrician.blogspot.com/
Hi doc joshuy -- i enjoyed reading your take on Axona and look forward to following your blogs -- I've got it bookmarked -- but hope you'll give us a heads up here when you blog something particularly pertinent to AD and AD caregiving.
Dr. joshuy, your article about Axona was very interesting but discouraging for those of us who have our LO's on Axona, MCT oil or coconut oil. So many think it's helping. Dr. Newport reports that her DH is still improving after quite some time. I would like to see a discussion here with you and Dr. Newport on this subject and maybe Dr. Marsh could also weigh in. We are continually looking for something...anything that might help with this terrible disease.
Dr. Josh and I will be talking next week about how he can best serve this website. We are brainstorming ideas. He is just finishing up his fellowship in geriatrics, and is getting a master's degree in public health. He was a family practice doctor for 4 years before going into geriatrics. He is young. He is not a caregiver. I think he would be interested in Marsh's perspective as someone who was a practicing physician and then became a practicing caregiver. Post your ideas - he and I will hash it all out as to what is best for all of us. Marsh - join in. Your ideas are needed.
Joan, I think that anyone who is going to serve as a geriatrician should spend not just a few hours, but a few days reading posts on this site. It's an education.
As far as Axona goes, Sunshyne or someone listed all the ingredients. It has a bunch of stuff, like dairy protein and sucralose, that many people may be allergic to. I wonder if that is why some people were not able to tolerate it, but can tolerate the MCT and coconut oils?
Here is my input on 2 questions: 1) Axona. I tried my wife on it, but each time I gave it she complained of abdominal discomfort that lasted for over an hour, so I quit after 3 doses. I had previously tried her on both coconut oil and MCT fuel and oil with no obvious benefit. 2) As a practicing physician I did see a few patients with Alzheimer's. I only did primary care the last 8 years of practice. When I became a caregiver I realized that when I was the doctor caring for AD patients I had NO clue as to what the caregivers were going through. When a doctor is taking care of an AD patient he/she should spend at least as much time with the caregiver as the patient, particularly since there is not much of any value that can be done for AD. The primary goal of the doctor should be to keep the caregiver healthy so he/she can do a good job of taking care of the AD patient.
Dr. Josh is a bit of a mystery to me. Not sure what he wants of us or what he can give back. Almost seems that we will be the subject of a thesis. I'll hold judgement.
nora, being the subject of his thesis might not be all bad -- hopefully he'll learn, and be able to expound on, the caregiver's side of the illness, and help our campaign to educate the medical community about the dark side of AD caregiving.
I've certainly recommended to our neurologist to read this site, and I'm sure I'm not alone. Participating, maybe eventually. But read a year's worth first!!!