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Bad experience with keto

Discussion in 'Alternative Therapies' started by Mary, Nov 5, 2018.

  1. Mary

    Mary Moderator

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    Well after reading @leokitten’s excellent post about the ketogenic diet and how well he did (which post told me everything I needed to get started), as well as an enthusiastic endorsement from one of my sons who has done very well on it, with great reluctance I gave it a try a few weeks ago. I used the cronometer app which I recommend highly (this app can be used with any type of diet). I had a question about the app, emailed them and got a response within a day or 2 (!) Plus it's pretty powerful. My son liked it better than My Fitness Pal.

    I was pretty well-prepared and cut my carbs drastically almost immediately. By the evening of the third day I began to think I could not stick with it, my fatigue was so profound (not PEM, had not overdone anything) plus my brain was quite fuzzy, I thought it was the “keto flu”. Then the 4th day I woke up and though still fatigued and fuzzy, felt a fair amount better and thought I could stick it out. I felt well enough to make a light trip to the grocery store, only getting 10 or 12 things, and then I think a few other minor errands - e.g., maybe paying some bills, it’s foggy . . .

    And by that night severe fatigue hit and I woke up the next day crashed. I had not done enough to provoke PEM in a normal state. And the PEM lasted twice as long as normal. So I had to stop keto - I could not function and obviously something was wrong.

    My guess is that my body was having difficulty going into ketosis - burning fat for fuel - despite rather rigorously following the diet, and thus relied even more heavily than usual on amino acids. About 4 years ago I discovered that branched chain amino acids cut my PEM recovery time in half, have taken them religiously ever since, and that recovery time has remained constant, until keto. Suddenly I was back to the bad old days. I am pretty positive that keto depleted my BCAAs, and probably several other aminos. It took me close to 10 days to recover from my 4 days on the keto diet.

    It just occurred to me that if I had increased my BCAAs while doing keto, I might not have reacted so badly to it, but I don’t have any desire to try an experiment with it again. Those 4 days took too much out of me! I had been primarily hoping to have some of the benefits @leokitten wrote about - better sleep (a biggie!), increased energy, etc., and losing some weight would have been icing on the cake (if one were allowed to have cake with icing on that diet!)

    However, reading about the ketogenic diet has prompted me to add more fat to my diet and now I am going to try what @Learner1 is doing: roughly 50% calories from fat, 25% from protein and 25% from carbs. But I’m going to be careful, watch out for unexplained fatigue, etc. I haven’t started this yet, have been dealing with other things, but it’s on my to-do list . . .
     
  2. rel8ted

    rel8ted Senior Member

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    It is common to have an adaptation period with keto called the keto flu - tired, foggy, aching body for some people.I did not experience that at all. Sorry you did. It is usually recommended to supplement electrolytes, especially during the adaptation period.
     
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  3. Learner1

    Learner1 Forum Support Assistant

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    @Mary Good for you for trying it and sharing your experience. I did it successfully last year for about 5 months, but I was already on a low carb, no sugar, no grain diet going in. My doctor had me use endogenous ketones, plus c8 oil in my "Bulletproof" coffee, to ease me into it, so I could keep more veggies in my diet. Still, I avoided potatoes, sweet potatoes, and other root vegetables. I didn't experience the "keto flu" so many people have.

    From comparing notes from other patients, sticking it out is the key to staying on keto. If you can get through the first 2-3 weeks, the negative symptoms go away.

    However, as we've discussed, the keto diet doesn't have enough protein for many of us with ME/CFS. My amino acid panel results were low in all the aminos found by Fluge and Mella in their PDH study. So, I went off the keto, added in a custom amino acid supplement (commercial ones are high in arginine, which I DON'T want and the ratios of the others are wrong for me) and a few more vegetables and a little fruit. It's a diet I can stay on pretty easily.

    I love Cronometer! Trracking macros is easy and it did show me I wasn't getting enough potassium in my diet, which would be a problem, as @rel8ted refers to above.

    Keep us posted!
     
  4. Wishful

    Wishful Senior Member

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    My keto attempt had been negative too. I'm not sure whether I reached full keto (no careful monitoring), but it did make me feel much worse, and not want to experiment further. I expect this diet is one of those things that works well for some people, and should be avoided by others.

    If someone wants to promote a keto diet as an ME treatment, they should explain about keto flu, how long it typically lasts, and if there's any way to tell whether it's a temporary condition or just the wrong diet for a person.
     
  5. Mary

    Mary Moderator

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    I could have tolerated "just" the keto flu It was the crashing - PEM (which is not the keto flu) after very minor exertion, plus PEM lasting twice as long as it has been, that I could not tolerate. PEM is not the keto flu. And I was up on my electrolyes. That was one of my first concerns. I have to take extra potassium daily (have for years) and also lots of salt and magnesium.
     
  6. Mary

    Mary Moderator

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    I agree, and I don't know of any way to tell in advance who it may help or not. And I do think people with ME/CFS will have issues with keto that others won't (such as depleting BCAAs).
     
  7. Mary

    Mary Moderator

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    It wasn't the keto flu that made it intolerable for me - it was the crashing - PEM - after not doing much at all, and then taking twice as long to recover. Ordinary people don't have PEM, they "just" have the keto flu. I think I could have handled the keto flu, but not the horrible PEM, nor how long it took to recover, which I think was due primarily to depletion of BCAAs by the diet.

    This is great, I didn't know about endogenous ketones or c8 oil But I think I still would have had issues with lack of BCAAs, and my body using aminos for fuel. I don't have a custom amino acid supplement, though I do take a fair complement of them. And am just adding in citrulline after reading what you have said about it helping with sleep. I've been taking ornithine for quite awhile.

    And I really like the diet proportions you're doing of fat, protein and carbs. I think I would do well with that. I have been eating low carb, very little grains, almost no sugar for years. But I've also kept my fat intake very low, trying to lose weight. So my goal is to add in more fat and start keeping track of everything on cronometer.

    Once I get set with my new diet regimen, I'll let you know how it goes (after thanksgiving! :whistle:)
     
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  8. Learner1

    Learner1 Forum Support Assistant

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    that makes sense!:)
    I got tired of taking 45 capsules a day of aminos and still being short. Though the powder seems expensive, I think it's a break even, and I dont have to keep buying all those little bottles...:meh:
    The problem is, if you drop carbs and fat, all you have is protein. And, there's only so much protein one can consume. So, if carbs go down, fat goes up. Everything I've read says the worst is high carbs and high fat together, so I think you're on the right track - but you have to do what works best for you!

    Good luck!
     
  9. olegsel

    olegsel

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    CONCLUSIONS:
    KD causes thyroid malfunction and L-thyroxine treatment may be required. This is the first report documenting the effect of KD treatment on thyroid function. Thyroid function should be monitored regularly in epileptic patients treated with KD.
    https://www.ncbi.nlm.nih.gov/pubmed/28076316
     
  10. Ema

    Ema Senior Member

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    People seem to have this idea that higher levels of thyroid hormone are always better and that lower levels (or increased levels of RT3) are always worse. The problem is that the body is not that simple and there are other factors to consider.

    We don't really know what optimal thyroid hormone levels are, or if they are the same for everyone (despite what some popular websites say). We have no good way to measure thyroid hormone levels inside the cell, where it counts. What if lowered levels of thyroid hormone in the blood actually meant the cell was using up the thyroid hormone more efficiently? This is an equally likely proposition.

    Many people with hypothyroidism, including myself, have great luck with a ketogenic diet. I prove their "rule", my FT3 is always 2.5-3, yet I am not overweight and have far more energy on a ketogenic diet than when I boost my thyroid numbers to fit some imaginary ideal.

    We are not lab ranges or research studies, we are complex human beings and metabolism cannot be reduced to any one parameter.

    There are many reasons people may struggle with a ketogenic diet. But the only real truth is that we, as humans, are designed to be metabolically flexible. We are designed to seamlessly switch between burning glucose or using ketones for fuel as we go through periods where food sources are abundant or scarce. Most modern humans have lost this flexibility and ride the glucose roller coaster 24/7.

    There is even some evidence that people with MECFS may not be able to use glucose properly and ketones provide an alternative fuel source that bypasses any theorized block at PDH. The ketogenic diet also is deeply stabilizing to the brain and beneficial to the mitochondria. Reduced inflammation is healing. The benefits of a ketogenic diet far outweigh the potential drawbacks, in my opinion.
     
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  11. Mary

    Mary Moderator

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    I think this is what @leokitten said, one of the reasons I wanted to try it. And it worked out great for him, but ended badly for me. But I'm really glad it's worked so well for you!

    I'm not saying the keto diet is bad. All I'm saying is I couldn't tolerate it, I crashed badly after minimal exertion, took twice as long to recover, I couldn't handle it. But my son does great on it. I wish I had been able to tolerate it.
     
  12. Wayne

    Wayne Senior Member

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    Whenever I start any kind of new eating regmine, I always think to myself that I'm trying a "modified" this or that. For instance, as I experiment with "intermittent fasting", I think in terms of "modified intermittent fasting". If I ever delved more deeply into the ketogenic diet, I would think in terms of "modiifed ketogenic diet".

    We are all so different, and even our systems can change from day to day, week to week, month to month, etc.. What what works or doesn't work at one moment in time, may be just the opposite under a slightly different set of circumstances only a short while later.

    This approach to diet experimentation is similar to my approach of other things as well, where my primary interest is in trying something out without putting undue stress on my body and/or psyche. -- Thanks @Mary for sharing your keto experience. It's been something I'm currently looking at, and every bit of information helps.
     
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  13. wabi-sabi

    wabi-sabi

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    @Mary I had a bad experience trying to cut carbs as well. I had read Dr. Wahl's book and such high hopes. But I've tried it twice now and each time it has made me nearly non-functional with exhaustion. I'm taking it as a sign the keto diet is not healing for me. But then I've found a good diet to make me feel a bit better, but it's by no means a cure. Eating well just keeps me sort of functional. For me that's lots of veggies, lots of bread and small amounts of meat and cheese. I also try to eat my cravings- I don't mean boxes of oreos! I really do crave broccoli or kale or sweet potato fries alternately and take it as a sign that's what my body needs. Every couple days I get a meat craving. The better I am able to listen to my body the better I do. Unfortunately it just never gets back to pre-ME/CFs normal.
     
  14. Mary

    Mary Moderator

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    I am the exact same way about what I eat. Some days I want eggs, other days they don't appeal at all. But one takeaway I did get from the experience was realizing I needed more fat in my diet. e.g., I might have a piece of fish or meat for dinner, with some veggies on the side, but plain - no butter, nothing to make them taste good! Anyways, as @Learner one said above, if you're getting calories from carbs or fat, then it's got to be protein. So I am modifying my diet a bit to incorporate more fat - e.g., butter on my vegetables, lots olives (which I love!), and so on.
     
  15. Mary

    Mary Moderator

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    Hi @Wayne - if I were trying the keto diet knowing what I know now, I would have doubled (at least) my daily dose of BCAAs. That crashing scared me. It's how I used to be and I don't want to go back to it! So - I think you were going to give BCAAs a try, and if you do and they help you, then if you do ever try the keto diet, you might consider increasing the BCAAs. Onward and upward, right? (except downward and backward sometimes too! :confused:)
     
  16. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    Have you tried MCT oil? I add to my broth, cofee and late night and it keeps my energy very high! I have been struggling w KEto until I added ( note some plp have stomach sensitivity to it) but I am the most sensitive and can stand it ( since I was a child I have bad tummy). Best of luck figuering out!
    I quit the last 3 times and have stuck to it this time around since May ( I have cheated here and there )
     
  17. Mary

    Mary Moderator

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    No, I didn't try MCT oil It might have been helpful! I had two different kinds of fatigue. One I think was probably the keto flu, which did get sort of severe (though I probably could have ridden it out), and maybe the MCT oil would have helped with that.

    But the other fatigue was PEM, crashing, and nothing helps me with that except BCAAs, which I think got depleted. Plus the crash was twice as bad as usual, and I really didn't do very much to bring it on - it was scary to me. That's when I stopped.

    So it's theoretically possible that if I had increased my BCAAs and used MCT oil, I might have tolerated the keto diet better.

    What benefit(s) are you getting from the keto diet? How is it helping you?
     
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  18. ryan31337

    ryan31337 Senior Member

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    Hi @Mary,

    Sorry to hear it gave you a rough time. Realistically though I don't think 4 days is enough for most people to keto-adapt. In my experience that was actually about the time of peak keto flu symptoms, it was only after about a week or 2 that my energy levels started to really improve (though I did have some other more immediate improvements that I relate to non-CFS specific issues in gut etc).

    The keto flu for me was like a giant unprovoked PEM crash. I had my usual symptoms of worsened OI, banging headache with extreme brain fog and the most severe muscle weakness/fatigability i've experienced - literally could not raise my arms in the shower to clean myself. Had to treat that first week like I had the actual flu and not leave the couch.

    I'm not discounting the possibility you have another deficiency making the transition difficult though - perhaps you could attempt a more gradual initiation?

    Ryan
     
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  19. wabi-sabi

    wabi-sabi

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    I'm working under the assumption that anything that causes me to crash this badly isn't helping my health long term. I know many of us have been helped by keto diet (and I'm sort of jealous of that), but for me it makes me so, so much sicker. I too am scared to bring on a crash like this again. I don't know the underlying mechanism here- am I too weak to withstand keto flu? does my metabolism simply need a lot of carbs?

    If people feel better with MCT (medium chain fatty acids) that suggest to me a problem with beta-oxidation and transport into mitochondria of normal length (long) fatty acids. That suggests to me a problem with fat as an energy source, which is bourne out by my experience of feeling better with more carbs. On the other hand, the right sort of fats are good anti-inflammatories. Like olives!
     
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  20. YippeeKi YOW !!

    YippeeKi YOW !! Senior Member

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    Second star to the right ...
    @Ema

    You're absolutely right. We aren't lab ranges, or research studies, or lab rats. And that's precisely why the ketogenic diet could be deadly bad for some of us, while the Holy Grail to others.

    I don't know if it's actually possible to entirely lose an historic, 100,000+ years old adaptive biological genomic response. If it were, wacky thyroids, either hypo or hyper-, would be non-existent, since we would have been adaptively designed to maintain proper thyroid balance to insure survival. What is entirely possible is that all human biological mechanisms bend, to a greater or lesser degree, to circumstances, and generally recover homeostasis when the triggering mechanism is resolved or healed or removed.

    Exactly so. No body is that simple, and any systemic disorder, like ME/CFS, complicates the equation considerably. So if it works, it works, and you keep doing it, taking it, or using it ...... and if it doesn't, it doesn't, and you stop and course-correct.
     
    Last edited: Nov 6, 2018

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