I have always tried to be honest and factual in my discourse. I make the following disclosures in that spirit.
Last week was terrifying. In a three day period my balance became very challenged, I lost my ability to rise from a chair without lifting myself with my arms, my coconut oil benefits-window shrunk from 5-6 hours to less than 2 hours, low back pain was nearly constant, and I had my first Parky fall. What the ...!??
Then I recalled that three days previous, I had begun taking a statin drug (Simvastatin, 10mg), together with two other drugs related to an angioplasty and stint implant. Known side effects of statin drugs are muscle weakness and pain. In addition, the way that statins work is to inhibit liver enzyme action that produces LDL cholesterol, a path that is used to convert Coconut Oil to Ketones, presumably important for PWP benefits.
I dropped the statins. Three days later I can rise from a chair again, my balance is better, and my coconut oil benefits-window is increasing (now up to 3-4 hours). I am looking for natural ways to lower my cholesterol (so far Apples, Psyllium, Cholestoff, and Red Rice Yeast; any other ideas?). For me, dealing with Parky is more important than a slight reduction in heart attack risk:
"The great majority of people taking statins have no history of heart attack or stroke, and the idea of taking statins is to prevent such an occurrence – so-called ‘primary prevention’. In this context, statins do not save lives. For healthy individuals, then, the evidence shows that countless individuals might stop their statins, but not one of them will lose their life as a result.
What might happen to the risk of having a non-fatal heart attack, though? Well, the data here shows that in primary prevention, 300 people will need to be treated with statins for a year to prevent one heart attack [1]. So, if someone were to come off their statins for a year, the risk of them having a heart attack as a result are actually tiny (about one third of one per cent). Even if we multiply this figure over several years, the risk still remains very low.
In individuals with a prior history of heart attack or stroke (‘secondary prevention’) the benefits of statins a greater. In this context, for example, statins do reduce the relative risk of death (particularly from heart attack). However, again, this benefit needs to be taken in the context of underlying risk. The data show that if 200 people were to be treated with statins for a year about one person would be spared a heart attack. If 100 people were treated, only about one life would be saved over the next five years [2]. Taking all benefits into consideration, over five years of treatment, 96 per cent of people would not benefit at all.
This means, again, that if even if someone has had a prior heart attack, stopping statins is actually quite unlikely to usher in a heart attack or earlier demise.
It’s only by taking a cold hard look at the data and understanding it in real terms that we can make an accurate judgment about the supposed risks of stopping statins. I think we doctors do a huge disservice to people by either not being aware of the data or giving patients a false impression of the risks of stopping statin therapy."
fwes again: So for me, it comes down to balancing a small reduction in chance of a heart problem to dealing with Parky. I choose to deal with Parky and hope that skilled cardiologists can fix my plumbing if the need arises.
Note: My lipid levels have always been in the safe range for a non-cardiovascular patient, and continue at those levels. My primary care physician is puzzled at my history of good numbers and the subsequent blockage. As an identified cardiovascular patient, the cholesterol goals have been lowered substantially. Hence the advice to undergo statin treatment.
Coconut Oil Issue
A large proportion of middle-aged adults are on statin drugs. Several PWP have tried Coconut oil and reported no benefit. I must wonder: How many PWP who got no benefit from Coconut oil were taking statins when they tried the Coconut oil? I would appreciate hearing from you, either through this post or by private message,
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fwes
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when my Dr started me on statins, my tremor immediately got worse, so I stopped them and am doing well again. I have also been walking 3 X week for an hour each and no longer have episodes of my left leg wanting to drag. My stride is longer too. Much more energy during the day also. And walking has no side effects like medication!
You are absolutely correct. Try a brief burst of fast walking . Pick a level safe area with no one else in the way , lean forward and go. It is a matter of keeping a fast rhythm, a small old walk-man tape recorder with ear phones(you can still buy them from Sony) or I guess a smart phone, there is probably an app for that, playing music with a fast beat helps. Amazing what we Parkies can do. Try it , I think you will find that the harder you push the better you will feel and the distance of each burst will gradually increase. I sometimes use it instead of a nap. You might look a bit funny, just ignore it. One minute I can barely walk and the next I am flying down the road for half a block. My neighbors think I am nuts. I am pretty sure that is why. What else?
I love this - imagine a parky flying down the road! Where I walk I can't do that but I do 3 brief bursts of high intensity pedaling on my exercise bike in a 10 min work out. I learned that on a post here someone shared. Good for the heart... and lots of fun. I look forward to it every morning.
Try eating a bowl of oatmeal every morning to lower your cholesterol. It worked for me & several others I know.
I , can not take statin drugs. My doctor (Pre-Parkinsons, normal blood pressure) suggested statin for preventative reason and it took 15 days for the muscle pain to slowly increase to the point that I had to stop and then it took 15 days for the pain to stop. I have often heard people talk about the large drug companies in very negative terms and I dismissed it. However when it comes to statin drugs , I have to wonder, because almost every guy I know is taking them . People with PD eventually have to take a handful of several medications every day and at this point even if I could, I would not add another powerful medication to the soup mix just because my father died of a heart attack.
I have been told coconut is not a good thing to put into your body. What are you using it for?
FWES How much statin were you taking? I have been on lipitor for 15 yeas following bypass surgery. I take 20 mg which doesn't appear to be a large dose. Recent cholestral was 178. HDL 86; LDL 78, try 69. My cholestral was as low as 155 but has risen a bit since taking coconut oil regularly
I also have been taking coconut oil regularly for 1 1/2 year. I use Fuel for Thought which I find convenient. I also take two pieces of toast each day with regular coconut oil.
I'm 78 (79 in February) My tremor, right hand, started 4-5 years ago. I had some problems with swallowing and some saliva problems but these have gone away since taking the coconut oil. Tremor is about the same. I take no PD medication. I try to walk regularly using leki walking poles which I find adds a bit to the walking. In my earlier life I ran a few marathons (best time 3:18) and was a runner for years. I watch my balance but it seems normal. I had a hip replaced 2 yrs ago.
I do take 40mg Diovan and Coreg 3.125mg for blood pressure which remains normal.
For supplements I take 1 gram ceylon cinnamon, 2 Tbl cod liver oil, 3-4 pieces of herring each day, cq10 with ppq and Vit D 2000g. My neurologist says he prescribes Vit D to all PD paients.
I'm going to talk to my doctor about the statin. Really at my age how much more time will a statin give. Time to be realistic.
this is most interesting: "My tremor, right hand, started 4-5 years ago. I had some problems with swallowing and some saliva problems but these have gone away since taking the coconut oil. Tremor is about the same. I take no PD medication."
MIT has influenced the adoption of a Systems Approach to everything but healthcare. When I designed safety systems for the FAA, we carefully balanced possible harm against expected good. What has happened to "Do no harm"?
Specialists are not only myopic, they are often ignorant! The other day I heard of a confession by a Neurologist, who was not a movement disorder specialist, that he had received a total of 90 minutes of formal training on PD, What can we expect for a Cardiologist?
What a frightening experience Wes. Thank you for sharing it with us. So glad you realised what was the problem and were able to bounce back. I agree with everyone who recommends exercise for heart health. With PD we need to do all we can to prevent drug interactions.
After 20 years of taking statin meds, my husband stopped two years ago, We have come to believe that these meds might have contributed to some of the Parkinson's symptoms that he has. We do not wish to discourage anyone else from taking any of their prescribed meds. Indeed, we're just sharing his experience. He had stated from the beginning that he was getting "aching/soreness" in thre muscles, but the doctor discounted the minor aches due to the "need" for the statings. How we wish he had developed a more rigorous diet/exercise plan to reduce cholesterol! To date, he seems to have experienced no downside to stopping the statins; he is 81 and has advanced Parkinson's symptoms. Doctors have been reluctant to diagnose as traditonal Parkinson's due to irregular symptoms....apparently a conundrum.
OUR neurologist went so far as to say that while HE considered statins one of the greatest medical advances in the last 50 years and prescribed them 30 times a day...for that ONE PERCENT who did not respond well to statins...well, he said in my husband's case that he would have developed Parkinson's eventually but that the statin perhaps brought it out 15 years early.
If we read information about the meds we are prescribed, we might never take them. Our doctor has often said that when the situation is dire. the benefits can outweigh the risks. Now we are reading studies that tell us that high cholesterol isn't that dire after all. Go figure!
Regarding statines there is a better way... a natural way: MAGNESIUM.
Copy from page 90 (The Magnesium Miracle -M.D. Carolyn Dean-)
"Magnesium acts like a natural statin. A well-known magnesium proponent, Mildred Seeling, M.D., just before she died in 2004, wrote a fascinating paper with Andrea Rosanoff, Ph.D., showing that magnesium acts by the same mechanisms as statin drugs to lower cholesterol."
As laglag said eating a bowl of oatmeal every morning to lower your cholesterol it is a nice way too.
Excellent post, Wes. When talking about Coconut Oil we often forget the many potential improvements in cardiovascular health.
My doctors hounded me for years to take a statin to improve my cholesterol levels. I tried regular daily walking and found no improvement in my blood cholesterol, so I finally gave the statins a try. Unfortunately they did not improve my blood work after 6 months, and my feet started swelling. The doctor tried a couple of different brands and foot swelling got worse, so I discontinued the use of statins.
Several years later I learned about Coconut Oil, and gave it a try. After two months I asked my doctor for blood work because I was concerned about eating so much fat from Coconut Oil, and was worried I might be making cardiovascular health worse. To my surprise my blood work was outstanding, my HDL was up my LDL was down, the Cholesterol/HDL ratio was down, and my triglycerides where way down. In short my cardiovascular health sky rocketed with Coconut Oil and it became a staple in my diet. My doctor said whatever you're doing, keep doing it.
Your comment about Coconut Oil and ketones is a little off. Ketone levels from Coconut Oil alone can get as high as 0.4 mM/L for a short period of time, wheras nutritional ketosis maintains ketone levels above 0.7 mM/L.
How are you using coconut oil? I can only seem to find coconut water and oil to cook with. I would love to know how others are using and having success with coconut oil! Thanks
There are many ways to use coconut oil. I use it for cooking and only use raw virgin organic coconut oil. I use it as a skin cream, hair conditioner (use in limited amounts only on wet hair at the ends) It is a very good anti inflammatory and boosts brain function. As well it helps heart disease and can help you loose abdominal body fat. Check it out here:
You can also take a tsp of coconut oil in your mouth and let it melt then swish it around for about 10 minutes. This will kill bacteria growing under the gums and between the teeth and if you tend to get mouth ulcers, this will help prevent them.
We order coconut oil from amazon.com because the price is good. We also purchase it from BJs, Costco and Aldi's. Purchase the virgin, unrefined coconut oil. We get organic certified.
I have never been a fan of statins to treat CAD (Coronary Artery Disease). I have experienced the benefits of IV Chelation (Long Bottles) and feel it is a much, much better way to treat heart disease. I worked for a period of time with Dr Elmer Cranton in Yelm, WA who pioneered Calcium EDTA Chelation and founded ACAM. He Harvard Med school grad but no longer practices. If you google Chelation providers in your area I am sure you will find someone who is ACAM certified. Please note some practitioners have started using Short Bottles and Oral Chelation. In my experience and after consulting with Dr Cranton about a year ago, he does not support either of those methods. Also, make sure they are using Calcium EDTA in their therapy protocol. Chelation removed heavy metals from your system which cause plaque build up in your arteries. It also removes plaques related to high cholesterol in the process. You must have well functioning kidneys (they will do a urine dip for Creatinine and BUN and adjust your EDTA dose accordingly at each treatment. I have seen great benefits from this and highly recommend it to anyone dealing with cardiovascular blockages.
If you ask a cardiologist they will tell you this does not work. However, Dr Cranton is a Harvard graduate and is also a Cardiologist.
Do your own research on this and if you have questions let me know. Chelation will not affect or alter any of your PD medications.
We have had this discussion before. The issue of whether the human body can produce Ketones without Ketosis is an issue of science, not one of heartfelt opinion.
If I understand you, your opinion is that ketosis is necessary for the human body to produce ketones.
My opinion is that ketosis is an important way, but that there is an alternative way for the human body to produce ketones.
Many readers of these posts are not scientists and I believe that in fairness to them we should clarify and state the expert scientific basis for our claims.
My expert sources: Jeff Volek and Stephen Phinney, the latter of whom has a PhD in Nutritional Biochemistry from MIT and an M.D. from Stanford. I quote from page 115 in their book "The Art and Science of Low Carbohydrate Living":
"Unlike long chain fatty acids that require assistance from mitochondrial membrane proteins to get into the mitochondrial matrix, the median chain fatty acids bypass this regulatory step. If we consume more medium chain fats and can be burned in a short period of time, our liver converts the excess into ketones which in turn can be burned by a wide range of organs (e.g. the brain)".
Since Coconut Oil contains a high percentage of medium chain fats, the last sentence applies to coconut oil in particular. I note that although the book is on low carb issues, this section is background material and is not subject to the low carb hypothesis.
Satwar has correctly stated the quantified limits on this alternative process.
Im not disputing any of Fwes' findings or experience. I personally have an aversion to statins but i now find myself in a quandry. I am aware that statins are now entering trials for possible neuroprotection properties. Does anyone have more info on this?
Conclusions: Our results provide additional evidence regarding the lower incidence of PD among statin users. These findings warrant further research regarding the possible neuroprotective role of statins in PD and other neurodegenerative diseases. - See more at:
How on earth do you manage to stay on top of everything!?
The web is suddenly filled with references to this possibility, and I admit the quandry. I decided to publish this post for several reasons:
1. In my case, there is an apparent interaction with the role of the liver in generating ketones from coconut oil and it is important to me to know if this is a shared experience,
2. Background: Wise words from another post (by Hikoi):
"Norton your question asks what 'caused' your Parkinson. Do you make a distinction between cause and trigger? Do you think they could be different?
I understand that we have less than 20% of our dopamine producing neurons left when the condition shows symptoms that lead to being diagnosed. This means it takes years to develop. Recently I heard a scientist saying at least 10 years. If that is so (and I believe it is) then things that happened 2 or 4 years before diagnosis could not have caused PD because the person would already have PD by that stage but not know it. What do you think?"
In the statin case, I note that the benefits cease when the statins are no longer used. Are statins preventing PD or simply delaying the trigger? Does neuron destruction continue?
3. I am leary of deep pockets, especially those that have a history of cherry-picking what they publish to serve their financial interest. With all of the discussion, some by doctors and scientists, of the downside of statins, I have yet to see a drug company position paper on the Risk - Reward balance from statin use for reduction of cardiac events (similar to the well thought references that I included in this post). Certainly with all their studies, they have many facts: Pro and Con. What do they know about statins and PD that they are withholding? So I offer my experience as a single data point, wondering if my experience is an anomaly or if is sufficiently wide-spread to warrant consideration.
Your thoughts challenge and are always appreciated!
The Statin was considered preventative based on type of statins:
"Among patients who used lipophilic statins (lovastatin, simvastatin and atorvastatin as examples), the researchers found 1.68 cases of Parkinson's disease for every 1,000,000 person-days. A person-day for lipophilic statins is a measurement of how many days a patient takes the statin.
Among patients who used hydrophilic statins (pravastatin and rosuvastatin as examples), the researchers found 3.52 cases of Parkinson's per 1,000,000 person-days."
"Patients who continued to use the lipophilic statins were 58 percent less likely to develop Parkinson's compared to those who stopped using these statins.
Patients who used simvastatin (Zocor), a lipophilic statin, were about two-thirds less likely to develop Parkinson's compared to those who did not use that statin. The medicine worked especially in women, with their risk for Parkinson's decreasing up to 89 percent.
With atorvastatin (Lipitor), another lipophilic statin, the risk for Parkinson's decreased by about 76 percent. This statin was also beneficial for the elderly, with their chances of developing Parkinson's dropping by 58 percent "
How about looking at this from the opposite direction. I am told the human population is genetically divided: those that can take statin drugs with zero side effects of muscle pain and those that due to extreme pain can not stand statin drugs in any way and that there is little in between.
Maybe, the people who for genetic reason can not take statin ( therefore stopped) also have a genetic tendency to have Parkinson's ? Maybe it sounds silly, but is that not as valid as the assumption that the statin drugs prevented the disease? . It is not unusual that the presence of a genetic variation both protects against one thing while also causing a weakness for another. To answer the question, we need to know what percentage of people here that have been diagnosed with Parkinsons can and can not take the medication. Very interesting
Welcome to our community! I just looked at your other posts and find them to be informative and valuable. Your "advice for the newbie" should be suggested reading for every newcomer. Blunt and Honest: the enemy is Denial.
I really like your current suggestion. Profound! Suppose we had a way to screen for susceptibility to Parkinson's. This would be an important step towards prevention. So far we don't know how, but perhaps even a vigorous exercise program would be a good start. Following the suggestion of Hioki (quoted above) this might be a way for discovering people who are already on their way to PD that have not shown the symptoms, (rather than some kind of genetics indicator) . But it doesn't matter if these people can be given an early treatment that prevents or mollifies their PD experience.
Wes
I have a genetic profile at company called you23andme along with several thousand others who had already been diagnosed as having PD. I am going to check if 23and me will do a survey of all the Parkies to see what percentage can take Statins . May be you could approach Healthunlocked to do the same.
I am looking into what has been documented about coconut oil. I have always been leery of tropical oils but I will try it. I understand that in some places like India and parts of Africa that PD has a low incidence rate, maybe the food. Thanks for the kind words. I will let you know about my results of taking the oil.
I think your idea about researching statin intolerance would be difficult, for a start it assumes everyone is or has been on them. I also found this recent study which claims that most statin intolerant patients can eventually tolerate them.
I think 23andme has a response to statins category. I wonder if there is any difference btwn those with pd and the general population.
• in reply to
I just completed a new survey on Statin Drugs compatibility at 23andme and hopefully a lot of the other registered Parkies did also. Hopefully we should soon know what percentage of the Parkies had a bad reaction to Statin vs the percentage of the others who do not have diagnosed PD.
Kuddos to you on the excellent detective work to figure out the problem was the statins. My husband with PD also has insuliin resistance although he is still classified as pre-diabetic. (Not on any meds other than a low dose of Synthroid (recent). To make a long story short since I have much to do tonight, take a look at supporting endothelial function (lining of arteries and veins) by supporting blood sugar and insulin regulation. The Coconut Oil diet with low carbs does this very well (My husbands cholesterol and HDL are the best they have ever been on this program.) Another things to look at is Vitamin K2 (if you are on blood thinners this needs to be regulated with your doc.). Vitamin K2 directs calcium to the bones and teeth vs. the soft tissue. There's more and I will try to get back when I have a bit more time.
Really appreciate your insight since I saw a client today with PD (as a Clinical Nutritionist) who is on statins and not seeing any benefit from introducing coconut oil (although his levels are still pretty low). Thanks!
We are looking into the science of how the liver produces ketones and how it produces LDL. There are definite enzyme overlaps. Statins are designed to interfere with LDL production. Do they inadvertently interfere with Ketone production s well?
I have a low stage Parkinsons and take no medications, predominant symptom of tremors. I have taken coconut oil and found no discernable benefit. Is there a critical mass to be taken before benefits kick in? Most I took was 4 Tbs a day as I do not like coconut smell or taste but will do anything safe to forestall progression. Let me know.
Coconut oil is a nutritional supplement NOT a medication and the only information that we have is anecdotal based on individual experience. I personally saw benefits rather quickly when I was only taking 4 T per day. I also do not like the smell and taste, so I use "Pure" instead of Organic (in the US at Walmart bakery aisle Lou Ana CO <$8 per quart).
The point of this particular post is to discuss possible interactions between statin drugs and coconut oil benefits for PWP. I understand that you see no benefit. Are you taking statin drugs?
I hope this helps. If you have more questions of course I will try to answer them.
fwesm, I said I take no medications, no statins and no other meds. My cholesterol and triglis are fine to low so I am fine in that department. I don't know what changes to look for since my chief complaint is tremor and it did not affect the tremor. I find alcohol in moderation, one glass about 2 oz. and half a beer does reduce my tremor when it comes up. Do you think alcohol is bad for me? I drink almost every day since diagnosis and tremor. I know Michael J Fox mentioned he was self-medicating with alcohol until diagnosed, but my amounts are moderate and prefer alcohol to meds because more predictable.
Love to hear your response and thanks for your response already given.
I took myself off statins 18 months ago, my diet includes fish 3x a week sometimes 4x and every evening I eat half a cup of pistachios. I started the pistachios a year before I stopped taking statins and my test showed a drop, so I cut out the statins and my cholesterol did go up some but was still acceptable by my dr. Don't know if this would work for everyone but it works for me
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