I feel that I need to update this with a few warnings...
-Constipation can get bad, very bad. In my case it was bad when I started, then things got semi-regular. Unfortunately I had to take some antibiotics and that eventually led to extremely painful stools, there was blood, pain afterwards for hours... I'm using psyllium now and things are much much better, I can't recommend it enough. The antibiotics were the most likely cause, but the keto diet itself is not friendly in this sense. This is pretty much the one thing that could get me off this diet.
-I don't have any evidence to support this, but I believe that the mineral loss that ketogenic diets cause can slow methylation down. Methylcobalamin has zero effect on me now - but this happened in the past too, there are too many variables to say for sure, I'm still testing things out but my intuition says it's the potassium.
Now for the good things:
-great for weight loss if you need it
-if you suspect you're pre-diabetic or going in that direction, taking in a lot of sugar, this is pretty much a must-try.
-it's not a guaranteed brain fog and fatigue reducer - but it sometimes does wonders, I'm still unable to find that sweet spot however ... and I'm still not sure how I trigger things, I sometimes get a great energy boost from half a pound of beef liver or a glass of salty water (or maybe potassium), other times meat can still get me tired. Greens are sort-of helping, but nothing spectacular, I had an incredible boost from half an avocado once, so I'm not sure what's going on. I'm trying lecithin now with a mild effect.
-I wasn't using any supplements when I started, just to get a feel for the diet, now I'm using a basic multivitamin, 2-4grams of vit. C/day and 2-4 omega 3 pillls/day, that's also very helpful.
Coconut oil + coffee + butter is a strangely addictive drink, especially since I wasn't a coffee drinker and I think the coconut oil is generally helpful - but again, no strong immediate effect from it.
On my to-try list are MCT oils, protein powder (it sometimes made me feel very tired 1-2 years ago), aminoacid peptides, making bone broth more often and some other sources of fiber/prebiotics. I also probably need to take things to repair my digestive tract.
The way I see this, I wanted to push phospholipids + minerals before restarting a methylation protocol. A high fat diet kind of makes sense in this context as a preparatory stage because in my case, the last time I tried methylcobalamin + methylfolate and some SAMe, the effects lasted as long as I took the pills, there was no after-effect and it all faded back, exercise intollerance, you know how it is.
Yesterday I carried ~44 pounds (20kg) for a short distance, it didn't kill me, I went for a walk afterwards. This would have probably been impossible a few months ago.
Sorry for the chaos.
I wish there were more people here trying this.
Has anyone tried the much-marketed XCT / brain octane oils?
I wonder if intermittent ketogenic dieting might be an idea. Instead of the full ketogenic diet, you could say have one meal a day (like your supper) which contained carbs, but the rest of the 24 hour cycle you keep to the ketogenic diet. This approach may bring some of the benefits of the full ketogenic diet, but would much easier to do.
According to what I've read, once you get over an upper limit of carbs, it can take days (weeks?) to get back into keto, but there's a lot of non-science floating around, so who knows. I've also read that the more you stay in ketosis, the easier it is to get back into it after going back to a carb metabolism.
I'm planning on sticking to it for at least one more month or even two - everything is just fine with added fiber.
I'll post blood tests (fat and liver related) when I'll have them, I'm quite curious about the values, I used to have low HDL and that's generally regarded as not good, but I don't think it's the cause of my problems, just another broken gear in the machine.
I don't really understand all of it, I've had days when I cleaned up the entire house, went shopping, did some (brain intensive) computer work with no issues, and I've had days when I didn't really get out of bed. Maybe I'm just slow or maybe the antibiotics hurt me more than I know, I was doing better before taking them (amoxicillin with clavulanic acid for some teeth problems)
This diet sounds very interesting to me, that's why I dig a little bit when I found some ketogenic diet regarding the gut bacteria. I wanted to share it with you. Maybe you have some thoughts about it.
"So, when I see a very low carb person, I often see not only a huge drop in dietary fiber, but a drop in diversity of dietary fiber and a significant drop in resistant starch, which is a huge source of nutrients for the microbiome as well. Resistant starch is often called the third dietary fiber."
"That shift in the pH is going to provide opportunities for pathogens to maybe bloom up that may cause some down-the-road, long-term problems. But again, maybe not. Nobody knows for sure, but if you’re shifting that pH and you’re not fermenting, you’re opening the pathogen’s door. It’s going to take a long time to unwind this, but I think the more low carb people we can get in the study, we can contribute to the conversation at least to the point where it can serve as a baseline for maybe more controlled clinical kinds of studies. But I would never recommend a low carb diet."
Yep, microbiome good, antibiotics bad, even worse when on low carb, that was my experience. That's an interesting read, it's upsetting that people need to crowdfund such studies but if that's what keeps things moving forward then I guess that's how it's got to be.
" We’re more microbe than mammal" <--very interesting point of view.
I've been off keto for a few weeks, I was getting a bad autoimmune reaction, bruised + painful palms, the whole digestion thing... never happened to me before. Also a small rash on both cheeks + forehead, very lupus-like, this started a week ago and lasted just a few days, it was post-keto though, might have been the cold and I'm overreacting...
I'm not trying to discourage anyone from trying it, just make sure your gut is ok and you don't need complicated dental work or something else involving antibiotics while on it.
I will give it another try, but I think I need to diversify my diet a lot first. Thanks for the link @Theodore !
It's strange that there are people on reddit actively spreading the belief that we don't need fiber and it's actually bad for us, I obviously don't agree.
I wanted to say, I tried the Keto diet a few months ago. It tampers a lot with mineral balance which I believe is off in almost everyone with CFS so I did not feel great because of that. But it certainly wreaked absolute havoc on my digestive system. Its been months since i've discontinued and really it hasn't come back on track.
Sorry to hear that & thanks for sharing, for all the praise keto got so far online, I thought I was the only one having troubles with it. If it's any help, I've been having some luck recovering with psyllium husk and chicken soup - the kind where you simmer the bones 8+ hours to extract the minerals and whatnot, I have not tried probiotics (yet).
If anyone can make some probiotic recommendations (I will be buying from iherb) please do, the more I read about them, the more confused I get and the harder it is to pick one.
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.
I have the same experiences. I am on ketogenic diet since september and my energy increased - I would say 30 % and I also lost stomach pains.
Now I already eat sweet potatos for some weeks and I will slowly add some fruits and rice.
I am not cured but It definitly helped me a lot to improve my ME and the quality of my life. I dont know if it´s a way to go for everyone with ME but maybe it´s worth to try it. But I think it´s good to do it with a good dietist.
"Several years ago I lost 65 lbs following a very low carb ketogenic diet with 16/8 daily IF. This completely ruined my health (as we talked about before) and I also know many others who crashed doing this. So I am curious whether the work on the gut microbiome and methylation you've been doing is the key ingredient to your success."
I had an idea recently: instead of going on a ketogenic diet to get the liver to produce ketone bodies as an energy source for the brain, a much easier shortcut would be just to take ketone bodies as a supplement.
Although ketone bodies can be used as a fuel by the muscles as well as the brain, the muscles try not to use ketone bodies if possible, in order to reserve the ketone bodies as energy to supply the brain. Ref: 1
So if one were to take ketone bodies as a supplement, I think these would be preferentially used in the brain, which were we want them to be used for our purposes of improving neurological function.
There are three endogenous ketone bodies made in the liver:
and their spontaneous breakdown product: acetone
So I started to look online to see if these might be available. It turns out that some enterprising supplement manufacturer had already thought of this idea, and has brought to market a ketone body supplement consisting of beta-hydroxybutyrate.
Here is a blog article about the development of this beta-hydroxybutyrate supplement.
So with this KetoForce product, you may be able to get all the neurological benefits of a ketogenic diet, but without actually having to go on a ketogenic diet.
The downside is that the product is expensive: $67.50 for 16 servings. So that would cost $134 per month. Still, for anyone who gets major ME/CFS improvements from a ketogenic diet, this may be a great alternative.
I have not read this whole thread but its interesting on this page at least to hear that people have crashed using ketogenic diet. I did Dr Atkins diet many years ago when I was older teenager and then again in my early 20s and both times I got sick, it seemed to bring back mono symptoms--I'd had mono as a teen few years before and the other time I got strept throat---my immune system didn't like it and I also didn't lose weight that quickly on it. Whenever I go too low on carbs I feel sick. I have suspected some type of porphyria perhaps as sugar and carbs can revive me when low energy or not well. I tested positive for fatty liver though (not a drinker) and wonder if sugar has contributed---other than chocolate or sugar in varying amounts most days I eat pretty healthy, organic etc
I also went on anti-candida diet in the past and was strict for a few weeks but I never adjusted and thought I was losing my mind....finally one day I broke down and went got some chocolate....but it always takes a while to come back from that sort of thing. I do better though when i keep sugar/chocolate moderate and try to keep blood sugar more level, I am hypogylcemic. It is dilemma as I often feel low blood sugar blah no matter what I do and that lends me to reach for chocolate/sugar which obviously can get in bad cycle. I do think that a little chocolate can be beneficial however.
I just stumbled over this thread. Same in me: keto-paleo resolved my fullblown ME. I was so weak, I could not climb up any stairs nor lift a bag. Pain as hell. 20h of sleep in total over 10 days, wired but tired. Could eat almost nothing, losing weight frighteningly. 2 weeks later: happily walking with a 30kg backpack for 1h, just for fun... However, there were tons of little tricks involved to avoid side effects. If anyone has issues succeeding with a keto diet, I am happy to help.
A thing that I was however unable to resolve: I have an almost zero 5hiaa. It was even over the limit when I was mostly healthy, before ME. I do not know why it went down: ME? or keto? Question to all on this thread: anyone else had a 5hiaa measurement while on ketogenic diet? What was the result? Or before and after getting ME or POTS or polyneuropathy? (The latter two I still have). Thanks a lot in advance!
(it is not just a number in a lab sheet - it really corresponds to low serotonine symptoms in the gut in me. And if I do anything that decreases serotonine / increases its breakdown then I am lost.)
I've been trying to do the ketogenic diet and struggling as I am working on my food disciplines. I am much better than it was last year .
What I've been reading on ketogains is that it's important to supplement electrolytes when doing ketogenic otherwise fatigue, muscle cramps ,brain fog can all become problem.
A thing that I was however unable to resolve: I have an almost zero 5hiaa. It was even over the limit when I was mostly healthy, before ME. I do not know why it went down: ME? or keto? Question to all on this thread: anyone else had a 5hiaa measurement while on ketogenic diet? What was the result? (it is not just a number in a lab sheet - it really corresponds to low serotonine symptoms in the gut in me. And if I do anything that decreases serotonine / increases its breakdown then I am lost.)
If you want a comment from someone with low 5HIAA who has never been on a ketogenic diet ...
The only thing I can suggest is from this diagram:
(Hope it's big enough to read)
We had very, very low 5HIAA at one stage (measured in urine). An attempt to raise serotonin with 5htp was a total disaster and caused a major crash. Looking back, it probably had more to do with a b2 deficiency with the result that there was no breakdown product. We also had high quinolinate.
I know you said it is more than a lab result, but I like to work off diagrams, and this one helped us a lot.
@CCC thanks for posting in spite of not doing keto! (Just for fun: I was amazed to learn that you - and me alike, and all of us - actually were already on a ketogenic diet: mother's milk )
This is an excellent diagramm. - And now take this: I have a high tryptophan intake
- Tryptophan: 0.6 g or more (the WHO recommends >200mg)
- Total protein: 56 g or more
but metabolites on this diagramm are
- low: 5hiaa 0 (zero!) in 24h urine, melatonin low or normal in 8h urines morning evening night
- normal: serotonine in 24h urine, quinolinic acid and kynurenine in 1st morning spot urine
And I am tested for iron, Zn, Mg (in serum, rbc and celltrend) and all these vitamins (in serum, urine or celltrend) and they are normal, my dietary intakes alike. (On Ca I had a deficit on celltrend, but supplement since.) Where on earth can that tryptophan go? Is there a pathway how it dissipates into nirvana, right out of my body??
And I took a small amount of 5htp (about 1/10th of a 50mg capsule) and it caused these:
first, all good:
- I felt improved gastric motility ( I can feel that. Most people dont. But after more than a decade of yoga, I have quite good "interoceptive sensitivity", just to use a recently learned science-bullshit-bingo term )
- a nice relaxed feeling
- 4h later, a strong wave of heat allover.