Btw if I didn’t mention it somewhere in this thread, I did two lipid panels during my 1 1/2 year of keto, and plenty of lipid panels to compare to them during ME before. With ME before keto I had really consistent normal total cholesterol, high HDL, normal LDL, and normal triglycerides (with only a couple rare bumps to borderline on triglycerides). During keto my total cholesterol and LDL shot up to high even though I was only eating healthy fats as much as possible. HDL didn’t change, triglycerides naturally went down. This is VERY common with keto. My worry is that no one knows, seriously no researchers, no clinicians, what the long-term effects would be of having bad lipid markers on cardio and cerebrovascular health with keto. Many pro-keto people say hand wavy totally unproven things like it’s so anti-inflammatory you won’t get cardiovascular disease or stroke, etc. But they truly have no idea!
Though in all fairness, I’ve read through a few of the papers looking at LDL in keto recently and the subtypes of LDL because some people on PR were saying high LDL being bad in keto is a myth. There is evidence on one side of the agreement that suggests it’s not LDL levels that are concerning when it comes to keto, because supposedly LDL is how fatty acids are shuffled around through your body and with keto, fatty acids and ketones are the energy source so naturally LDL will increase since its being used and moved not stored. It’s the size of the LDL particles and whether the LDL is oxidized or not which determines atherogenicity, and proponents of keto say research shows LDL particles in keto are larger and not very much oxidized, whereas in standard Western diets and possibly others they are smaller and much more oxidized, which are both atherogenic. But honestly, there is sound scientific research and evidence on the other side of the argument too. There are quite a few good review papers, but I think this recent clinical debate paper regarding keto and CVD is interesting starting point if you can access it: The ketogenic diet: Pros and cons. O’Neill et al. Atherosclerosis (2020)
Here's a nice testimonial about a PwME who is so much better with a keto diet. Other people are too, as seen in the comments.
One problem is that it's easy to not eat food that protect LDL from oxidizing when aiming for ketosis, as these often contain carbs (vegetables). Then again, many of the foods that are restricted can be problematic for a number of people, so in sum it might work out. As long as nutrient requirements are met, which is not always the case. Another thing is that we don't necessarily know how long LDL is high when people start to eat a high fat diet, some people seem to adapt and LDL lowers again. Which makes it infuriating when a trial is only three weeks or so and you don't know if the high numbers will go down at a later timepoint (if they rose at all, some studies show high variance between subjects). Unfortunately I don't believe everyone that starts on restrictive diets take measurements to meet all their nutrient requirements, some of these issues may not be apparent for years
I just read in a book that it's expected to take 5 to 10 weeks for mitochondria to renew and get used to using ketones. This may imply that it should take time to recover energy levels and to clear brain fog, no?
Those of you who recovered with a keto diet, if you left the keto diet for a low carb, high fat diet, did the recovery last?
How long did it take you to get adapted? I'm into my 5th week, and my ketogenic bodies are still high (4.7 mmol/L), with a 3.9 mmol/L glycemia (as soon as I get up in the morning).
Keto helped me - I think. It has in no way been a cure, more a feeling that I do better. My step count didn’t improve much long term, if at all. However, I get fewer migraines, think I have a clearer head, and my appetite is definitely more consistent. However, I am probably now more “low carb” than keto. I think this does as well for me, and allows me more flexibility in what I eat. To stay full keto is quite restrictive. I like to have a bit if variety in my vegetable options. I still don’t eat bread, rice, pasta, porridge or potatoes, but occasional carrots, parsnips and turnips, I allow. PS Turnip: English translation = swede. USA = rutabaga
Moved post I was on the diet for over a year (mid 2018 - 2019) and it gave me really significant improvements for the first few months, though I overexerted way too much and then slowly it seemed to help less and less. I also have this strange ME symptom since long before doing KD, where I get ínstense hunger when I’m in PEM or close to a crash. Like my body is screaming out for energy. Quite a few other people report having this too. Overexerting with KD didn’t help with this and maybe felt even more intense. Last year ME got much worse, hopefully if I ever improve and have more energy I want to try the diet again without overexerting to see what happens.
Soon two months into KD, with 4.2 mmol/L ketones right after getting up, but no energy (although I take electrolytes 3x/day and have 230~250g fat daily).
Moved post In about 2015 I had multiple incidents of me misremembering, or just not remembering at all, plus the usual focus issues. I stopped writing blogs, stopped researching my book, and became less active on the forums. While its my personal experience, and not a scientific recommendation, I find my clarity and memory better now after months on a ketogenic diet. I am also trying to use the insights of Perikles Simon, first discussed on Health Rising, to build a slow and steady resistance exercise program. In fact I just came from an appointment with an exercise physiologist a few hours back. I have restored at least some of my lost strength. I can do nothing with endurance though, I crash if I try, as expected. Keto is not for everyone, and there are extra issues those with ME or other problems may have to overcome, but its an option for some of us. For example I had to improve my ability to cope with salicylate sensitivity in order to eat more high salicylate food, such as olive oil.
I was on keto for over a year. I recommend getting a keto breath meter. They are under $100. They take all the guesswork out of knowing how far you are into ketosis. The big advantage is very quick feedback about the food you're eating. For instance, you can eat an apple and see if it drives you out of ketosis and discover how long it takes you to get back.
Nick Norwitz recently cowrote a paper on lean mass hyper-responders, using their new lipid energy model. Cholesterol goes way up but there is no increase in signs of cardiovascular damage. So for this subset, lean and metabolically healthy on keto or very low carb, there is no increased risk that has been seen. This does not prove there is no risk for someone who is a type 2 diabetic however. Yet I am more concerned with HDL, triglycerides, and oxidized LDL than other markers. My HDL has gone up a lot on low carb, but my triglycerides went up too, and so did my A1c. I have new tests out on full keto but I have yet to be able to get to my doc to see the results. I am also on a drug called Sitagliptin, which blocks degradation of natural glp1 and unlike Ozempic may actually preserve muscle mass. Results pending as I said. In any of these discussions we also need to know if someone is obese, diabetic, has ME or is prediabetic or has a different high insulin disorder, like PCOS. I am still obese but lost over 10kg, and type 2 diabetic with ME. This may change the meaning of what I report. High LDL is similarly not a problem for many. There are however LDL subsets that are very much a risk factor, mostly from damage to the LDL molecule that impedes its removal.
Latest news. First the bad. I suddenly have a swollen right calf and five leg ulcers. I need to get an ultrasound to make sure there is no blood clot. Now the really good news. I went from dangerously diabetic to NON diabetic in 3 months on the keto diet. I was still in the prediabetic range, but its been months since I could get to a doc. Ketogenic dieting can reverse diabetes, and in clinical trials the success is reported at between 50% to 100% according to one expert I pay attention to. I have not done a deep dive of the literature though. I have also figured out how someone who is salicylate intolerant can do keto. Its been blatantly obvious for a long time but I was too caught up with concerns over saturated fat. Not any longer. Many foods on keto are high salicylate. Salicylates block two desaturase enzymes, needed to make long chain precursors of omega-6 and omega-3 eicosanoids. Vegetables typically contain none of these, though some sea plants we eat contain some long chain omega-3s. I take a teaspoon of butter and 2g of fish oil a day, and now can tolerate, for the most part, after months doing this, quite high levels of salicylates. I love my olive oil and spices. Spicy foods every meal, with no consequences.
In case its helpful to someone, this is how I eat now. My main drink is either water or green tea if eating. Snacks are walnuts or macadamia nuts. I start each meal with selecting protein, usually meat of some kind but I also eat tofu, and with ME we need more protein than regular people according to some findings. Then I add three low carb vegies to the pan. My spices and flavouring is next. Then a liberal amount of olive oil. Turn the pan on, wait, and maybe stir once. I vary the protein source, and the vegies, but usually eat one brown onion and some mushrooms, and vary the other vege the most. I make a point to eat a member of the cabbage family regularly, but also pay attention to onion and ginger families.
