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Lack of chatter about the Ketogenic Diet

Discussion in 'General Treatment' started by bsw, Aug 18, 2015.

  1. bsw

    bsw w/r/t

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    I've been on the ketogenic diet for the last 4-5 weeks and it has, by far been the biggest game changer when it comes to CFS. It has probably tripled / quadrupled my energy (of course, that means a lot less when you start from next to nothing), helped cleared up my brain fog and allowed me to really start tackling CFS. I want to emphasize that in no way has it cured CFS, but nothing else I have done has even come close in terms of results.

    In my searches I have seen a small, but positive amount of anecdotal evidence for the ketogenic diet. Searches for CFS on the subreddit /r/keto yield mostly positive stories. Dr. Myhill gives it a glowing recommendation. So have other doctors. So if the ketogenic diet is resulting in individuals getting better why aren't more people talking about it? When I search for the ketogenic diet on phoenixrising reveal 2-3 short threads talking about the diet. But nothing else.

    Do people just not know about the diet? If so I can understand, the current state of information on CFS is a mess right now and is probably impossible for anyone entering to actually figure out what is going on with all the terminology being thrown around and the multitude of ways presented to manage CFS. Completely understandable why people would overlook this.

    However I really think the ketogenic diet needs to enter the conversation more. Yes supplementing with obscure vitamins is great, as is various medications. But this is something super simple that doesn't require a gigantic investment from the individual. Not the end point obviously, but a really good starting point for sure.

    Or am I just completely full of shit?

    http://www.drcourtneycraig.com/blog/2015/3/25/a-ketogenic-diet-for-mecfs-fibro
    http://drmyhill.co.uk/wiki/Ketogenic_diet_-_a_connection_between_mitochondria_and_diet
     
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  2. cb2

    cb2 Senior Member

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    this is good news! i am glad you are doing better.. i am interested in trying this i was trying paleo but fell off the wagon, how did you manage to do this ? any tips on keeping it simple and doable?
    thank you
     
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  3. Effi

    Effi Senior Member

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    hi @bsw I follow my own version of the ketogenic diet too, and it works well for me too. For me it's not a cure, but it definitely gives me better life quality (although I'm still housebound).

    From what I've read on PR I think a lot of people have a lot of different reactions to different foods and diets. Some people also have specific sensitivities or allergies to certain food groups or food combinations, which makes certain diets almost impossible to follow. There doesn't seem to be one diet that works for everybody.

    Just a small sidenote: 4-5 weeks is a short time to really know if a diet is working. I've personally experimented a lot with different diets, and sometimes in the beginning what you notice is more about what you don't eat anymore than about what you do eat. So keep us updated on how it works for you! (Btw I've been eating this way for over two years and it still works well.)
     
  4. cb2

    cb2 Senior Member

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    @Effi Hi i would love to learn more about what you are doing with food? if you have energy to share.. i log my food in my fitness pal.. but i am having a h ard time sticking to a specific food plan on my own.

    thanks -cb
     
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  5. AaroninOregon

    AaroninOregon noob

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    I've heard of it, but it doesn't sound that appealing to me. I would rather eat a steak than a stick of butter.
     
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    It's not super simple if you don't have the energy to do the research, figure out what that means in terms of eating (I read the links they said nothing about what ketogenic meant in terms of food on the plate). And then you have to switch how you've eaten habitually for decades. That means changing shopping habits sourcing new food learning to prepare different meals. Some people rely on others to do food shopping and preparation and then there are other family members eating habits to consider.

    I know it seems negative to say this but that is why it might be difficult for some.

    This diet may be quite useful to those who don't struggle with surviving the day. For the many here that do struggle it actually is not quite so simple. But again for those who can it's great if you get benefits. I'd love to hear what foods are part of the diet.

    And I love avocados. Eat them all the time when they are available.
     
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  7. Effi

    Effi Senior Member

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    hi @cb2 I've always been interested in healthy eating, so I've tried a bunch of things over the years (was already into these things before I got sick). I used to follow diets to the letter, but I've found out that that wasn't so helpful for me personally. So with the knowledge I gained over the years (by reading and trying stuff) I kind of made up my own plan. Whatever feels good I eat, whatever doesn't I cut out. It turns out similar to ketogenic, with some aspects of paleo and raw. Whatever that means ;) (Btw I never stick to something for the sake of it. My symptoms fluctuate and so does my diet.)

    Basically I eat lots of healthy fats. LOTS of vegetables, cooked and raw (usually raw for lunch and cooked for dinner). Enough protein, focus on fatty fish, and poultry (preferably the darker/fattier parts of the meat), lower on red meat. Eggs. Small amount of fruit (preferably lower carb/high anti-oxidants e.g. berries). Nuts and seeds. Dark chocolate (86%). Espresso coffee, chamomile tea and water. Lots of high quality salt and black pepper. No grains or higher starch seeds like quinoa. In fact no sugar whatsoever (apart from a tiny bit in the dark chocolate). Nothing refined, no additives. (I must add that this diet was also designed in order to get my sugar cravings under control. I've found out that focusing on protein in the morning keeps my blood sugar stable throughout the rest of the day.)

    Some notes:
    - the fats should be high quality from a trusted source (= sadly more expensive), e.g. for cooking - organic ghee (clarified butter), coconut oil; only used cold: organic butter, cold-pressed olive oil, walnut oil. I also eat high fat dairy in the morning (like greek yogurt or cottage cheese).
    - some PWME have problems putting on weight. This diet helps you lose weight, so I wouldn't recommend it to underweight people.
    - I do have help for cooking and shopping. It's a lot of work and I wouldn't be able to eat like this without help from others. I do help whenever I can. When I don't follow the diet I get worse instantly. So I don't find it hard to stick to.

    Hope it helps! What do you do diet wise cb2?
     
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  8. Effi

    Effi Senior Member

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    That's exactly how I see it, Snowdrop. It's a catch22. If you get help preparing and shopping, you can pull it off and get the benefits. If not, you rely on whatever you can get your hands on, whatever that is, even if it isn't necessarily great for you. It makes me so mad to think even such a basic thing as getting the right food is such a struggle for many of us. :( :cry:
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yes. Although I'd be interested to see what exactly is in the diet. I may already be eating some of it so at least that would make it easier.
     
  10. cb2

    cb2 Senior Member

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    @Effi i tend to lack discipline.. i did pretty well for a couple weeks with a paleo type plan, but wasn't getting enough veggies..then i went off the plan and since then my food has been kinda a mess. i do log it every day in my fitness pal...but i have fallen off the wagon. : (
     
  11. Hip

    Hip Senior Member

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    Very interesting @bsw.

    I was certainly aware of the use of ketogenic diets in the treatment of epilepsy, but had never come across it in the context of ME/CFS.

    Can I ask, after starting the ketogenic diet, how long did it take before you noticed the first benefits kicking in? And how long until you got to the state where your energy was tripled?

    I'd also be very interested to learn what changes you made to your meals in order to create a ketogenic diet. Was it simply a case of just cutting out carbohydrates like potatoes, rice, maize, wheat from your meals, and perhaps replacing them with more low-carbohydrate vegetables? Of course I know you need to cut out sugar too.

    And what about the ketogenic requirement for keeping to moderate amounts of protein? Is there anything in particular you need to do for that?
     
  12. drob31

    drob31 Senior Member

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    I was using the ketogenic diet quite a bit for years, and going low calorie on it, and I think it was one of the contributing factors of my flavor of "CFS." I think it's a great diet, and will actually raise your cortisol levels, however it puts a larger stress on your adrenals. If your adrenals can't handle it, it may be contraincated. If they can, it could be great, however.
     
  13. WoolPippi

    WoolPippi Senior Member

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    Ketonic diet = steak with some butter on it.

    Ketonic diet is not gorging on butter.
     
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  14. WoolPippi

    WoolPippi Senior Member

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    For me too.
    Keeping level blood sugar levels and getting all the amino acids my cells need are the reason why, imo. It also levels out brain chemistry (it's the one proven epileptic treatment in conventional medicine) and it improves the digestion procedure.

    Weird you feel there's not enough chatter about it. Perhaps because once you're on it it's just a part of daily life? That's why I don't talk about it much here anymore I guess.

    It's not difficult or a lot of hassle. I find (planning) to take a shower more stressful.

    I cook once a week (pan of soup or steak or fish salad or curry) and this provides me with ketonic home made meals the rest of the week. I take HCL with my meals.
    Isn't it the diet dr. Yashko puts all her autistic child patients on?

    I got my info from Homo Optimum by dr. Kwasniewski; from the Hyperlipidblog and from dr. Bernstein ("the Bernstein Connection"). Bernstein is a type 1 diabetic who needs no insuline to cover his meals, that's ... astounding. He's in his 70s and the eldest surviving type 1 there is. Astounding!
     
    Last edited: Aug 18, 2015
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  15. alicec

    alicec Senior Member

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    Maybe because it is not resulting in many people getting better.

    I have followed the diet you describe for a couple of years and while I did see a modest benefit initially, over time this disappeared. Eventually I realised that such a diet starves the gut microbiota and can't be recommended in the long term.

    The addition of moderate amounts of carbohydrate in the form of starchy tubers as well as resistant starches makes more sense.
     
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  16. Art Vandelay

    Art Vandelay Senior Member

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    Great news! I had a similar experience when I adopted a ketogenic diet about 16 years ago. I started to get reduced brain fog and more energy almost immediately. However the first week of the diet was a bit rough (my theory is that the lower blood sugar levels caused a die-off of bad bacteria).

    Prior to starting the diet, I was essentially bed-bound (only able to get up for showers and meals) but was able to return to work part-time on a very limited basis at first.

    As you say, it's not a cure, but it's by far the one thing that I've tried that has given me such quick and dramatic improvement.
     
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  17. A.B.

    A.B. Senior Member

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    Ketogenic diet makes me feel significantly worse in the short term. It felt like inadequate blood sugar levels. I don't know about the long term because I don't have the discipline to endure it long enough. Also ketosis causes a bad taste in the mouth.
     
  18. Effi

    Effi Senior Member

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    Sometimes falling off the wagon means that the diet you're following is not for you. The rule of thumb in these things is that you need to push through for about 3 weeks to get your body used to it. If you still have major cravings after that, it means that something is missing. (What you crave is usually not what you're missing. It's a guessing game sometimes.) Maybe if you share what are your cravings/body type/major symptoms someone might have an idea which kind of diet could possibly be good for you?
     
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  19. bsw

    bsw w/r/t

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    Looking at my notes it took me about 2 weeks to properly adapt to keto, BUT I wasn't taking in enough electrolytes. If you find yourself after a few days exhausted on a keto diet it's probably electrolytes. I now drink homemade soup to manage my electrolyte needs and its been working out pretty well. I have however come down with a cold over the last few days that has thrown my data little off.

    Before going on keto I ate a pretty restricted diet already, so the change wasn't really a problem. I seem to be pretty sensitive to chemicals and had already cut out grains, sugars, diary and alcohol from my diet. I therefore just had to cut out potatoes and other carbs from my diet to make the switch. I eat and ate mostly meat and vegetables, before and after. I have increased my soup (homemade, using bones) intake for electrolytes.

    I really don't pay attention to macros and just eat when hungry, occasionally use muscle testing if I'm unsure. I think that (personally) the time and effort required to come up with a plan that actually works wouldn't be cost effective. At some point I will try and hash out a plan to make this more long term as there are some risks involved.

    As for my energy levels, I'll have to go over my notes at some point, but as a university student I went from writing 1000ish words a day, 1-2 days a week to about 3000-4000, along with dedicated study over extended periods, 3-4 days a week. I have also had an on and off cold which effects my energy.

    Yes, but there was some benefit. Most people suffering from CFS have no idea what to do and from what I've seen the things they try to do usually have nebulous results. I'm saying it's a starting place, not the destination. If it gives CFS sufferers more options and more ability to make decisions on how to act, then I think that is fantastic.

    Something about your body switching over to ketosis (the way the biology works, a 'dependence' on carbs, idk) causes the first week or so to be tough. You need electrolytes. I've found the best way is to drink homemade soup that uses bones. I tried supplementing and I felt like I was dying. My symptoms went away about 30 minutes after I drank some soup. If you tried keto and was supplementing proper then I have no idea, sorry.


    I can understand. I am extremely lucky my parents support me and could not do this with them. I was also hasty in putting this together.
    The diet is roughly 80% fat, 20% protein. Anything else goes. Provided you're eating around those numbers you'll be fine (energy wise). Day to day I mostly eat fried or baked meat, cooked in oil with eggs and occasionally throw in vegetables that absorb fat, along with steamed vegetables (which taste utterly delicious). Nuts and soup are my stacks and I use a lot of Coconut oil.

    I just don't eat carbs, don't eat stuff I don't make myself and generally try to get my macros / a nice variety of vegetables. I also have bone broth or soup daily, which is really helpful.

    I can definitely relate to the before and after effects of the ketogenic diet. There were some days were I completely forgot I had CFS for periods of the day.
    You might be right about the bacteria die off, but I think its switching the main energy source that messes people up.


    ---

    Oh and another great thing about the ketogenic diet is that it makes fasting (which has all sorts of nice health benefits) so much easier. Probably because your body can use its fat stores far more effectively for energy.

    Thanks for all the feedback!
     
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  20. justy

    justy Senior Member

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    Hope im not being thick here, but surely Dr Myhill's diet is a paleo diet, not ketogenic. Surely the only difference between the two is that one forces you into ketosis so that you lose weight and the other doesn't.

    Theres tons of stuff on PR about paleo diets.

    I've been a patient of Dr M's for years and she swears by her very strict paleo diet, but it just made me feel really ill and does not work for me im afraid.
     
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