A tasty dose in the 3 tablespoon per serving range is available in the USA from Fuel For Thought. It also has reduced calories compared to coconut oil. It's actually a mixture of coconut oil and MCT oil. The price is not cheap but it may help people who don't like the taste get into the therapeutic dosage range.
No, they won't ship outside U.S. and I live in Canada.
I tried MCT oil alone though and wasn't too impressed. It doesn't have the staying power of coconut oil. Seems very much like the sensation you described.
I noticed someone posting good results with Fuel for Thought however in one of your posts (user: attyj). I remember because they also reported that their tremor had diminished, but noted that stress brought out the tremor again.
A lady by the name of Terry Wahls made a very amazing recovery from being in a wheelchair with MS. I believe she followed a Paleo diet. She wrote a book about her findings. I suggest this book as a good starting point.
I not obsessing on a low carbohydrate diet because my carbohydrates come from high quality vegetables (kale, broccolli, red cabbage etc). Processed food carbohydrates, however, are not on my menu. I have embraced a three prong attack, coconut oil (for ketones), high quality vegetables (for micronutrients).and daily moderate exercise (brisk 60 minute walk).
I'm with you about quality carbs, not processed ones. From my understanding though, it is essential for a high fat content diet just as you are doing. I have a strong feeling that the most favourable treatment for PD is going to show itself through people like you, given time. We must keep with it and not lose hope.
I must give you credit for pointing me i the right direction with high quality vegetables. I feel a quantum leap better since my initial quantum leap from eating coconut oil.
I upped my dosage from 6-8 to 10-12 TBS CO around the same time I increased my vegetables and haven't gained any weight, although my very slow decrease in weight seems to have plateaued. It seems hard to gain weight when eating kale and broccoli.
You have the stay ability to see this through, a real Trailblazer. I'm doing something similar and will continue to follow your posts to see whatever results you are getting!
I can say with confidence now that my bad right hand tremor has gone, as long as I avoid stress. Unfortunately it is hard to avoid stress and be alive, so this is a big BUT. My tremor also comes back, in between CO doses, but that can be solved by more frequent doses, which I do in the morning.
I've noticed on my daily brisk one hour walks that the initial stress brings out a light tremor but that about 1/2 way through the walk the tremor stops. Several months ago my right hand would shake quite heavily throughout and after the walk.
These are all baby steps, but I find them encouraging. Taken in totality, since I started CO 5 months, I never imagined I could be where I am today.
Me Too! Sometimes I feel that I see evidence of actual remission. Good days, Bad days, Wishful thinking??
Perhaps our quarterly reporting will help us to separate wishful thinking from real results.
One avenue would be to find a list of tests (finger tapping?) that have a limited learning curve and which provide a quantitative score that is relatively immune to manipulation.
The annual administered Updrs is a start.
If we all did the same tests, we might be able to guage progress or decline over time.
You know I am really disappointed in my neurologist in respect to testing, but have no other options living in a small city. She checks my arms for rigidity and my walking gait every six months, that's it. My original neurologist did a complete Parkinson's Disease Rating Scale test every six month visit.
My meds are: 3 x 1.5 x 100mg/25mg levocarb and 3 x 1 x 1.5mg mirapex and 2 x 1 x 2mg trihex
To eliminate them would be a huge step, for now I'm just happy that they have not been increased for several years now. I have had a sneak preview though, when I accidentally forgot my evening meds dosage. All I had was a slight tremor in right hand.
The only motivation for such a bold move would be to eliminate side effects, of which I have nothing major. I'm also concerned that my neurologist may disown me, which would not be a good thing when I have such a serious disease. At this stage I am not sure that the ketones have reversed the cell damage, but rather simply improved the short term functioning of the cells. I could be wrong, but at this stage I am not confident that my disease has been reversed. I.had a short term preview of this question when I had a massive blowout of my symptoms when I was put under stress when I had not yet taken my meds, coconut oil, or had my evening meal.
I do, however, feel very positive that disease progression has slowed or stopped with ketone therapy.. At the very least it has dodged the bullet of having to deal with a disabling tremor which my neurologist said can not be treated with available pharmaceuticals. The improvement to my quality of life is priceless, Parkinson's can really make one very miserable.
But time may provide more permanent healing. Of course everyone is different and I have always speculated that the sooner you can treat the disease with ketones, the more likely/easily permanent recovery may be possible.
I guess my short answer is no, I don't plan on discontinuing my conventional meds in the foreseeable future.
Yes, it is a big step to just reduce the amount of drugs you take, let alone stopping them altogether. Even so, not having had the need to increase your medication owing to the other measures you have taken will give a lot of us PwP heart.
Mary Newport just related to me that someone has been on 12 TBS daily for 4 years. Not only has the progression stopped, but he was able to stop taking all meds. Pretty amazing results..
Thank you Satwar for your post. Was the person taking the CO for Parkinson's or some other neurological conditition? I must say that that I would caution anyone about taking such a massive daily dose, without, first verifying the claim and ascertaining that such a dose is safe. I have my doubts, but thank you for your post anyway.
PS. CO in the UK at that dose would require quite an income!
Yes I wrote to her about my Parkinson's and whether time at 12 TBS level would get results. She felt 12 TBS is a good place to be and told me about this man who has been at that level for 4 years, and not to discount the element of time.
I passed on this anecdotal evidence in good faith as an illustration that there is evidence that duration of treatment can improve the situation, and not to expect instant results at a given dosage. As we all know, many have seen satisfactory improvement at lower dosages.
No one doubts your sincerity in passing on this information. I believe that if anyone is going to reverse this condition, it is you. I look forward to reading of your progress whenever you have something to report.
I started my regime of CO on April 12, 2013. I use "Fuel for Thought." Each vial has about 2T of CO on the formula. They cost about $1 per vial but it's easier to take. I take one in the morning and one in the evening.. In addition I usually have 2 pieces of toast with CO from a jar on it during the day.
My tremor in my right has diminished unless I'm stressed. My wife has commented on this also. I had a minor problem with saliva and swallowing but that has disappeared.
Excellent report, very similar to my experience, except I'm using straight coconut oil because I do not live in U.S.A. Please be sure to e-mail Mary Newport about your success, she is actively collecting anecdotal evidence. If sufficient anecdotal evidence is collected on Parkinson's perhaps a medical research study can be launched (assuming funding can be found). Now that would be exciting.
How about your tremor? My husband has significant tremor, and are you still on prescription meds or using coconut oil only. I found organic extra virgin Coconut Oil capsules which have 1000 mg each capsule. They are made by Spring Valley. Don't know how many a day on these, but gonna have my husband try them.
1000mg gel caps are not near enough to the dose necessary.
1000mg = 1 gram / 1 Tablespoon = 14.25g
“Therapeutic levels of MCTs have been studied at 20 grams per day. According to Dr. Newport's calculations, just over two tablespoons of coconut oil (about 35 ml or seven level teaspoons) would supply you with the equivalent of 20 grams of MCT, which is indicated as either a preventative measure against degenerative neurological diseases, or as a treatment for an already established case.”
Co q10 quinol from Costco helps dramatically with the PD just an FYI . It tastes like an orange creamy Popsicle juice shot !! Comes in a black box. But keep refrigerated. Another miracle !! Approx. 29$ but they at times give a rebate. Take 2 to three shots per day. And watch!!
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