There had been several posts in the past few months discussing benefits of large doses of coconut oil for relieving portions of PD symptoms. One of the issues that has come up from time to time is the question of the impact of taking a large dose of the saturated fat in coconut oil on one's overall health. I and others have shared comments from doctors reports indicating that their blood work has not shown an adverse reaction to the use of coconut oil in large doses.
We now have found a reference to a scientific study which explains our experiences. A little background: Lauric acid is one of the medium chain triglycerides found in coconut oil. In fact it is the majority constituent, constituting approximately 50% of the medium chain triglycerides in coconut oil. From Wikipedia:
"Lauric acid has been found to increase total cholesterol the most of all fatty acids. But most of the increase is attributable to an increase in high-density lipoprotein (HDL) "good" cholesterol. As a result, lauric acid has "a more favorable effect on total:HDL cholesterol than any other fatty acid, either saturated or unsaturated";[9] a lower total/HDL cholesterol ratio suggests a decrease in atherosclerotic risk.[10]"
[9] Mensink RP, Zock PL, Kester ADM, Katan MB (May 2003). "Effects of dietary fatty acids and carbohydrates on the ratio of serum total to HDL cholesterol and on serum lipids and apolipoproteins: a meta-analysis of 60 controlled trials". American Journal of Clinical Nutrition 77 (5): 1146–1155. ISSN 0002-9165. PMID 12716665.
[10] Thijssen, M.A. and R.P. Mensink. (2005). Fatty Acids and Atherosclerotic Risk. In Arnold von Eckardstein (Ed.) Atherosclerosis: Diet and Drugs. Springer. pp. 171–172. ISBN 978-3-540-22569-0.
Much has been written scientific literature regarding the health problems associated with the consumption of saturated fats. Most of these results are based on old research that was conducted prior to the understanding of the distinctions between HDL and LDL. Also missing was the understanding of the different impacts of medium chain triglycerides and long chain triglycerides. Current posts by reputable organizations continue to confuse the issue by referring to the older reports. Since some of these posts have recent dates they give the appearance that current research is having the same findings, when in fact they may reveal that current writers are not keeping up with the field.
Since we are not experts, it is unnerving when the experts become confused. The recent book by Jeff Volek, PhD, RD and Stephen Phinney, MD, PhD.
"The art and science of low carbohydrate living" provides a compelling discussion to support its title. We introduce it here however because it has excellent chapters on the medium chain triglycerides, on the many roles of cholesterol, and how these relate to human health. Most of their claims are carefully documented by references to the scientific literature. This is not light reading, but if you are going to take responsibility for modifying your treatment and your eating habits, you would be well advised to make an effort to understand the pros and cons of the anticipated approach. This book provides many answers.
I personally continue to experience good benefits from my daily 10 T of coconut oil. I have recently reduced my Sinemet from 25/100 3 per day to 1.5 per day VERY GRADUALLY and with medical supervision. So far no adverse reactions and no worsening of PD symptoms.
10T CO = 1200 calories added to my diet. Weight control is an issue. So far I am breaking even, but am feeling a need to make some life-style changes. But PD is a life-style change and so are the long-term consequences of Sinemet. As I consider my options, I crave FACTS. This forum is a wonderful place to share and discuss facts as we find them.
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fwes
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Thank you for such an interesting and open post. I fear that your scientific background comes out in your posts and is sometimes above my understanding, the result being that I feel that I can not contribute at the same level. However, I certainly 'get' that the extra calories can pose a problem if not controlled properly. May I ask, do you exercise regularly? If no, why not do as John Pepper keeps banging on about which is brisk walking three sessions a week, for one hour at a time? He believes that certain cells in our bodies can be rejuvenated as a result. I have recently started a walking regime and whilst not noticing any physical improvement in my PD symptoms yet, I certainly feel better psychologically in that it is good to be more connected with nature during parts of my walk. I certainly hope that John is correct about the cells, but even if it does not work out that way, the other important benefit is real.
Whatever you do, I wish you well and I look forward to reading any further posts you write.
Unfortunately the book is not encouraging regarding weight loss from exercise. I believe it said something like running 350 miles to lose 10 lbs. Weight loss is achieved by what you put in your mouth, but that in itself is not easy, that's what the whole book is about.
I can certainly agree with the latter point, but it's disappointing to know that exercise has so little effect in reducing weight. However, I feel that walking as you and John Pepper advocate still has its benefits.
The book appears interesting, but it is similar to the Ketogenic diet, as I said to you before I lost a lot of weight (good), but it adversely affected my sleep and constipated me even more.
Have you forgotten already ? Phinney says to take 4-6 g of sodium each day to avoid constipation. It's working for me.
I respectfully suggest that books are not the same. "The Art & Science of Low-carb Living" is extremely thorough and scientific, probably too comprehensive for many people. What I like is the detail about the impact on pre-existing health conditions. But if you can't read it, don't do it. As Phinney says finding nutritional ketosis is like finding an island in shark infested waters. You need a GPS. The GPS is a good understanding of the book.
Thank you Satwar. Not having read Phinney's book, I was following an amalgamation of other Ketogenic books, one of which was Barry Groves 'eat fat, get thin. He advocated eating dairy produce as did some others. I love cheese, and cream, used butter all the time. Whilst I lost weight, my sleep worsened incredibly and I became constipated. It was after a long time on this diet that I read about dairy produce possibly being implicated in the onset of Parkinson's. Now, I do not know the truth of that hypothesis, but it made sense to me that cow's milk is only for calves, so I gave up eating dairy.
Regarding the 4-6mg of sodium as a relief for constipation, is this ordinary table salt? How do you take it? Has taking this much sodium affected your blood pressure?
Yes I dissolve 2 ml of table salt in a small cup of water. That .gives ~1 g of sodium. Phinney says your body needs more sodium on his diet because you excrete more.. Blood pressure should be monitored if you have a concern
I suspect too much cheese is going to be a problem also. Increasing Mg supplement is also possible.
Good point Norton, I forgot that PWP often suffer from constipation. I never have, especially when taking 12 TBS CO daily and enjoying the benefits of CO therapy. I definitely agree to advise against pursuing nutritional ketosis if you suffer from constipation.
It follows what I said elsewhere in this thread, gain experience and confidence with CO therapy before pursuing nutritional ketosis. You are swimming in shark infested waters.
Let's agree to let scientists pursue consensus building over the next 300 years as to how and why nutritional ketosis works. If it relieves my symptoms and allows me to have a long and productive life (neither of which I have achieved yet) , what more can us humble anecdotals ask for.
There is however already support for this approach in the scientific community:
Neurology. 2005 Feb 22;64(4):728-30.
Treatment of Parkinson disease with diet-induced hyperketonemia: a feasibility study.
Vanitallie TB, Nonas C, Di Rocco A, Boyar K, Hyams K, Heymsfield SB.
Source
Division of Endocrinology, Diabetes, and Nutrition, Department of Medicine, St. Luke's-Roosevelt Hospital Center, New York, USA. tedvani@ewol.com
Abstract
Ketones may bypass the defect in complex I activity implicated in Parkinson disease (PD). Five of seven volunteers with PD were able to prepare a "hyperketogenic" diet at home and adhere to it for 28 days. Substituting unsaturated for saturated fats appeared to prevent cholesterol increases in four volunteers. Unified Parkinson's Disease Rating Scale scores improved in all five during hyperketonemia, but a placebo effect was not ruled out.
I could not agree with you more. Anecdotal evidence is something I accept if it seems logical to me. Given our ages, it is most likely to be the way forward for us and importantly gives us hope that we might not otherwise have!
Excellent point about reading and understanding before taking the plunge. As Phinney says, finding nutritional ketosis is like finding an island in shark infested waters, you need a GPS. The GPS is a good understanding of the book.
Furthermore, since all of us are already sick, we should think long and hard before taking action. This book was written for fat people wanting to be thin, not PWP. As a PWP I would strongly recommend that you acquire experience with coconut oil before attempting to achieve nutritional ketosis. For best results with coconut oil you need keep carbohydrate down.
Good Points! Re Exercise and Weight control: 1 mile = 100 calories; 1 pound loss requires 3500 calories or 35 miles. There are many valid reasons to exercise and you have listed some. Jon Pepper has had a great experience and is a model to be emulated.
10T CO = 1200 calories = 12 miles (per day!), so satwar is right: it's also about what goes in your mouth.
Exercise makes you feel good. The book makes a case that when fat people exercise, their metabolism slows down.
Unfortunately during the adaption phase of nutritional ketosis Phinney says to cut back on exercise, your body has enough to do without stressing with too much exercise.
At the age of 77, and diagnosed with P around the turn of the millenium, I am concerned that I have increased my medication to a level which seems to be increasing my side effects disproportionately to the benefits. I have been on Stalevo and Ropinirole for some time but have reached a limit of 5 Stalevo per day, filling in with an extra Sinemet (to avoid too much Entacapone, which seems to be advisable).
I would like to think that Coconut Oil will help me to reduce the meds, with a hoped for reduction in side effects, but I am confused as to the dosage required. FWES, you refer to a "daily.... 10 T". I am not sure what that means - 10 teaspoons, 10 tablespoons, or something else entirely?
The guidance is to increase the dose until you get the benefit you want him or digestive distress (indigestion for diarrhea) makes you to uncomfortable. No one can prescribe for you, we are not qualified and doctors don't know. So if you start down this road you are your own expert. Please proceed cautiously. I personally do everything in baby steps and consult with my family doctor frequently. Fortunately for me he is very supportive.
Please read page 164. Phinney states that serum ketone levels fall well below 0.05mM with 100g carbohydrate + 100g protein ingested daily. Carbohydrates have the biggest impact. This applies whether ketones are supplied from coconut oil or nutritional ketosis. This explains why some people don't see any effect, no matter how much CO is ingested, because they are eating high carbohydrate meals.
Therefore it is critical that people reduce carbohydrate consumption as much as they dare, to maximize the effect of CO. Mary agrees with this finding.
Just a thought about weight control while taking CO. If exercise isn't going to do the trick, can't we counteract the effect of the CO by controlling other aspects of our diet? I substitute CO for sugar in my tea, for example. But I must admit I probably need to do more than that. Maybe reduce quantities?
Actually what I found was that as long as I ate high quality (low glycemic index) foods my weight was stable, even taking 12 TBS CO daily. A hint though is to keep carbs down as low as you dare, to maximize the effect of CO..
I'm probably out of my depth here, but CO is a saturated fat whilst sugar is a simple carbohydrate, therefore may react in different ways within the body. For a better understanding, may I suggest you visit YouTube where there are some excellant video's with the authors of the book that Satwar mentioned. Alternatively, look up video"s on the Ketogenic diet.
If it is just a matter of taste, and if you are taking CO for PD anyway, then I agree with Joanne - CO in tea or coffee is very palatable and for me it eliminates the need for sugar or cream, thereby saving those calories.
I'd like to cut down on sinimet, having just increased it, but I know for a proven fact that eating too much protein effectively blocks absorption of sinimet to the point I cannot digest what I ate. So eating a low carb diet it OUT FOR ME! But I'm willing to add coconut oil to my diet.
I fullly respect your choices but wish to submit two issues for consideration:
Firstly I agree 100 %, and have stated numerous times that everyone should start ketone therapy with CO, so you learn what ketones feel like. Unfortunately if you consume 100g carbohydrate + 100g protein daily, Phinney says your serum ketone levels will fall well below 05mM and not be of much value to the brain. That's probably why experienced CO users are driven to 10-12 TBS CO daily, which many cannot tolerate.
Secondly the Phinney & Volek diet derives 65-85 % of energy from fat, whereas other "high fat diets" derive only 45-60 % of energy from fat. Protein intake is moderate (I'm eating 120g per day and weigh 200 lbs.)
- Starting to feel like a real human being again. No tremor of any kind while relaxing, No tension in muscles. Feel far better than when I was diagnosed 14 years ago. Tremor starts up easily from many kinds of stress, temperature, lack of food etc, but difficult to know which is the source.
- Don't feel hungry anymore. Have to lookup time of day to know when to eat. Also tremor starts up when food required.
-Taking 5-6 TBS CO to supply fat during adaption phase
- Awaken frequently (nomal for me), tremor starts, but is easy to stop by simply relaxing (THIS IS NEW)
- Still feel sluggish and don't feel like doing much exercise. Phinney says to take it easy during the six week adaptation phase. Walk slowly for 30 minutes is all I seem to be able to accomplish.
- My lower legs are starting to swell from lack of walking (normal for me, I believe Mirapex side effect). Will start walking a little every day again.
-Drinking lots of water and feel great. I think the headaches I had during the first few days was insufficient salt and water
- Urine ketone strips are consistently darker (about mid range)
Day 12 ( December 6)
- Getting purple on urine stick today (80 mg//DL), first time ever, must be in ketosis.
- Went for my short walk today, legs still very sluggish due to keto-adaptation. Walking helps keep the lower leg and feet swelling down, also elevate feet in bed at night.
- The great thing about this diet is you get to soar with the eagles without fear of having a ketone crash. But I strongly believe that PWP should have coconut oil ready just in case, because a ketone crash now would hurt.
- Still feel the effects of Mirapex, but not Levocarb. When Mirapex wears off my tremor starts up. Can calm it down with considerable effort, but much easier to suppress when I wake up at night.
- Ordered a serum ketone monitor, should have by next week or so.
- Increased Mg supplementation, as per diet plan, to 2500 mg daily. No ill effects
Day 13 (December 7)
- No weight loss yet, which is okay because I am after ketones not weight loss. According to diet plan, serum ketones slowly increase during the 6 week keto-adaption period.
- Swelling of feet gone down, it was just my lack of walking for the past week, normal for me.
- My god I'm still up @11:30 pm with only a slight tremor. The drugs usually wear off by 9 pm and I get so tense that I have to go to bed.
Day 14 (December 8)
- Beginning to feel the fat burning process on my belly fat today
- Increased Mg to 6 x 500,mg am concerned about constipation. I normally use 3 x 500 mg Mg daily..
- The last couple of nights I've woken in the night to a pretty heavy tremor. Not sure why this is, but makes it hard to get back to sleep.
Day 16 (December 10)
-Taking a TBS of coconut oil before bedtime seems to have resolved the tremor problem upon waking at night.
- I've decided to continue with consumption of CO to enjoy the benefits of ketones until I have achieved nutritional ketosis (~4 weeks away)
- Lost 3 lbs today
-Continue to be able to stay up late and function well with no tension. THIS IS NEW
- Good bowel movement this morning, but only achieved at higher than normal Mg supplementation (extra 1500 mg per day)
Day 18 (December 12)
- Ramping up Mg supplementation to 9x500 mg daily to facilitate bowel movement, would like to see daily activity in this area (which is normal for me)
- Sleep pattern getting longer,and strong tremor upon premature wake up not happening anymore. I just relax and tremor gone, fall back asleep easily.
Day 19 (December 13)
- Ramped up Mg supplementation to 12 x 500 mg daily to facilitate bowel movement
- Decided to eat my mixed vegetables at all 3 meals to facilitate bowel movement
Day 20 (December 14)
- Best sleep I've ever had. To bed @ 11pm, awoke @ 6:30am
- Bowel movement more normal, may have to cut back on supplementation soon
Day 21 (December 16)
- Decided to spread CO dosages throughout the day, now that I feel better in general. It seems like the rough part of keto-adaptation is over
- Simply amazing that I'm up so late with no tension and only very mild tremor
- Excellent bowel movement
- Ketone levels in blood must be rising because eyesight becoming acute and colours almost florescent @ night.
- Urine stick dropped to 40 mg/dL (as per plan)
Day 24 (December 19)
- Reduced Mg supplementation to 9 x 500 mg daily, stool quite loose
Day 30 (December 25)
- Finally ketone monitor arrived. Seem to be in early stages of nutritional ketosis, serum ketone ranging from 0.6 to 1.2 mM/l. I measured 1.2 mM/l after a short walk and noticed my hand tremor was virtually stopped. Very promising results.
Day 33 (December 28)
- Been seeing a gradual increase in fasting (before breakfast) serum ketone since monitoring began. Started @ 0.8 mM/l on December 24, now @ 1.4 mM/l on December 28. Serum ketones and glucose seem to have an inverse relationship. The low carb diet dropped fasting glucose from 140 to ~80 mg/dL
- Beautiful examples of post-exercise ketosis. One hour after my brisk walk ketone levels are up to 2.7 mM/l. This is what it takes to quieten my tremor, a pretty lofty goal indeed.
Day 35 (December 30)
- Huge increase in fasting (before breakfast) serum ketone @ 2.4 mM/l, glucose 77 mg/dL. Seems that paying attention to protein intake (~70 g daily) is helping raise ketones.
Whilst I'm not doing the low carb/Ketogenic diet any longer, I find your updates extremely interesting. Thank you for sharing your experiences with us.
A question for you; one of the reasons I decided not to pursue the high fat, moderate protein, low carbohydrate diet route was that it affected my sleep in that it reduced from four to two hours a night. May I ask has adopting such a diet resulted in you sleeping less? How much sleep do you get now?
It is normal for me to get my sleep in 2-4 hour intervals, this has not changed. My neurologist prescribed a mild sleeping aid several months ago. But what was annoying is that the tremor would start, making it hard to fall asleep again. What I'm now seeing, however, is that I can simply relax and the tremor stops, and I can fall back to sleep. This is huge for me.
Bowel movement problem seems to have been resolved with increased Mg supplementation, and lower legs and feet swelling seems to be almost gone. Keeping my fingers crossed that book is correct and the worst keto-adaptation symptoms are over.after the first few weeks. Now we get down to the serious business of boosting serum ketone levels. Hope my ketone monitor arrives by next week, so I know where I am.
Thank you Satwar for updating us on your home trial. I am pleased that the symptoms you mentioned are abating somewhat. It is my belief that if we are able to reverse, stop or even slow down symptom progression, it will probably come through those of us who are prepared to experiment on ourselves through, diet, nutrition and exercise (where possible). Unfortunately, I just can not see a drug being developed which will overcome the three factors I mentioned. Trouble is Satwar, it takes a lot of dedication by the person concerned and in you, fwes and some others on this website you have it in bucketfuls, what's more you are prepared to share your experience(s) with us.
Well in UK they are developing a ketone supplement which in theory can regulate serum ketone to any level desired. Unfortunatelly I worry that insulin resistant people like myself will not meet with success due to our exaggerated insulin response to carbohydrate.
Absolutely, that's what the low-carb diet is all about. Reducing carbs so that insulin overreaction does not occur. The insulin reaction to carbohydrate is broken in insulin resistant people, so the low-carb diet takes this broken function out of the equation. Hence providing an environment where ketones can thrive and prosper.
I believe I'm through this constipation issue of the keto-adaption phase. Hopefully I'll get my ketone meter soon so I can monitor serum ketone levels. Please check my log for details.
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