That's good to hear. It sounds like you have researched it well and are being careful in monitoring your symptoms. Thank you for sharing so much of your experience with us. I'll follow your progress over the next weeks and months with interest. (assuming you keep posting about it).
I do wish this keto diet worked for me. I tried it last year, it made me lose more weight but there was no real improvement to my ME at all. I tried paleo before that, with no effect. Bizarrely I am the opposite to what many experiences. More than a couple of hours without carbs and I will start feeling like absolute shit, fasting, not a chance, in hell, I would be in a bad way after a few hours. when I have bad PEM or I am flared up in the evening's the only thing that eases my symptoms a bit seems to be a full meal with substantial carbs. Weird how we all have this same crappy illness yet experiences of what makes us better or worse can be so different. Great that you are doing so well @leokitten it must be so exciting.
First thing for me to do would be "Buy a phone that can run apps and do some research into phone providers (not necessarily in that order)." I'm on a low carb (not keto yet) diet and have been for a few weeks. I'm working my way up to keto. I've found the DietDoctor site very helpful. All the nutrition info I need is given with their recipes. For the first time in my life I've actually paid to become a member, although it isn't essential. As a member I can create meal plans and shopping lists, keep favourite lists, watch relevant nutrition movies and interviews. But you can do a lot and see the recipes without being a member. https://www.dietdoctor.com/
I just went outside, by myself, for the first time in over two weeks. I now have far reduced, or close to zero, photosensitivity and eye pain from light. I've always had this symptom with ME and it would cause PEM if I were out far too long. I would constantly squint from being oversensitized by the light (even cloudy days), and I would constantly have this horrible pain in the orbs of my eyes, very similar to having a hangover. It was like my eyes and brain just couldn't process all that light information properly anymore and they were making it known to me. Before this diet and remission if I went outside, even if I rested for weeks, I would always have this symptom.
Just reading about Ketone bodies; don't understand it all but some things did jump out. eg liver involvement (read on another thread about potential liver probs in pwME(?)) https://en.wikipedia.org/wiki/Ketone_bodies "Ketone bodies are three water-soluble molecules (acetoacetate, beta-hydroxybutyrate, and their spontaneous breakdown product, acetone) containing the ketone group that are produced by the liver from fatty acids[1] during periods of low food intake (fasting), carbohydrate restrictive diets, starvation, prolonged intense exercise,[2] alcoholism or in untreated (or inadequately treated) type 1 diabetes mellitus. These ketone bodies are readily picked up by the extra-hepatic tissues (tissues outside the liver) and converted into acetyl-CoA which then enters the citric acid cycle and is oxidized in the mitochondria for energy.[3] In the brain, ketone bodies are also used to make acetyl-CoA into long-chain fatty acids."
Update: for the past 5 days on this diet my sleep has been so amazing compared to my 5 1/2 years of ME. Sleep disturbances were one of my worst ME symptoms. I would have very strong wired but tired feelings at night, could never fall asleep, would have these attacks/irritations in my gut or abdomen constantly waking me up and doing something to my brain to make me even more wired but tired and unable to sleep, sweating attacks, and finally the ME would trigger intense itching in my psoriatic regions causing me to constantly wake up. These symptoms didn't start right away when I got ME, at first I would sleep constantly and be super tired. But I believe some time in the second half of the first year they started coming online. In order to be able to function, during my 2nd year of ME I started working to find the best non-benzo, non-Z drug sleep meds (I wrote quite a few posts on that on PR) and I found a good combo. But as the ME slowly marched towards getting worse, I would have to take more and more to fight the symptoms so I could sleep, and I was losing that battle most days as the symptoms would just push through. Starting last year it got to the point that I had to make the impossible choice many nights of taking way too many pills or just not sleeping until I collapsed out of exhaustion. These last 5 days on the ketogenic diet I have zero sleep symptoms. I'm in shock at the sudden turnaround. They gradually and remarkably went away the first week or so of the diet. I have been taking only 1/3 the dosage of sleep meds as my baseline before and will work to wean myself off. I still wake up a bit groggy (due to sleep meds I believe), but not the same kind of totally exhausted, feeling disgusting and irritable groggy that was ME. I only take a few minutes to not be groggy now, whereas before I wouldn't get out of the ME grogginess usually until the afternoon.
Out of curiosity, @leokitten, can you tell us whether you tried other diets such as gluten free, grain free, fructose free etc before this. It occurs to me that the keto diet in some cases may be helping people with particular food sensitivities by removing those foods from their diet. I'm not saying this is the case for you. Edit - the sleep change sounds great. I'm starting to be tempted...
Hi @Trish - I tried two diets, vegan and gluten free. I did them with the same level of rigor, commitment, and care as the ketogenic diet. I did each diet for approx 2 months. Both did nothing to improve my ME and I continued to slowly get worse. Maybe I’m sensitive to carbs but that just doesnt seem right. I’ve never been a picky eater and always ate extremely well and healthy. I think it’s more the theory developed by the ME metabolomics labs, that a crucial part of ME pathology and symptomatology is the inhibition of PDH or upregulation of PDKs.
I've just deleted a post where I tried to work out a possible keto diet for myself. I thought it wasn't possible for me because I only need about 1200 calories a day. I've just realised I made a fundamental error. I was calculating percentages using grams not calories. Since fat has twice the calories per gram as protein or carbs, my calculations were wrong. Back to square one!
@leokitten, can you please give us an idea of what your daily diet looks like now? So, it sounds as though you knew quite quickly that the diet was having a good effect?
Hi Ryan, Skimming through this thread and don’t want to derail but...currently having a lot of histamine issues myself (it seems), and wondered how you’re managing to have stuff like avocado and yoghurt while on a low histamine diet. I currently seem to be set off by almost all food so interested if you’ve found a way of managing
Thanks for posting this. You have inspired me to try a ketogenic diet again. I did give it a go several years ago and just couldn't stick to it. More recently I am finding less and less carbohydrate seems to suit me and currently am eating no more than 50 g/day. I am hoping this will reverse a dangerous trend of fasting blood glucose and triglycerides creeping upwards. I've been doing intermittent fasting also, something which I couldn't manage at all a few years ago so maybe this time around I'll cope with the ketogenic diet. I'll go to the next stage and restrict carbs to 20g/day or less, plus other requirements of ketogenic. Will report back.
I see avocado listed as high histamine but it's never been a problem for me. Perhaps it's high relative to other fruit and veg but nothing compared to meats, fermented foods etc. I also tend to eat them when they're still a little firm and not too ripe, which probably helps. The yoghurt has been a bit trickier. First off there is only one brand that doesn't normally upset me (Coyo), other brands reliably cause problems. Also when going through periods of heightened intolerance, even Coyo has caused reactions, but thankfully not regularly now. I'm still very sensitive to other high histamine foods, can't slow cook or eat left overs, meat on the bone and pork is also often problematic. But the day to day reactions i was constantly getting despite avoiding all those have really died down since taking a DAO supplement and methylated multivitamin/nutrient.
There is a completely free resource for low carb eating with lots of recipes to download for free which you can find here : https://www.lowcarbprogram.com/ It also has lots of other informative resources. It is run by the Diabetes UK website, which also has a forum. You don't have to be diabetic to join either the website, the forum, or the Low Carb Diet program, nor do you have to be diabetic to benefit from any of them. Theoretically it is possible to join/use the three things with the same log in details for all three. I don't know how that is done though. I got into a right mess and have ended up with three different sets of log in details. Diabetes UK : https://www.diabetes.co.uk/ Diabetes UK forum : https://www.diabetes.co.uk/forum/ Low Carb Diet Program : https://www.lowcarbprogram.com/
Here's what I ate today. As mentioned in one of my previous replies in this thread, to make this diet doable for me and having ME I knew I didn't want to make any recipes yet. It's food deconstructed . It's good to buy a big variety of ketogenic foods. So even though you are just eating "things" together, you will have such a variety to choose from that it isn't boring. I'm sure in time I will get bored and start cooking recipes (where all ingredients can be saved together in reusable meals in keto apps), but for the near future while I keep getting better it's much easier to just eat things. Breakfast: 2 scoops Perfect Keto Base, BHB ketones and MCT Oil (coffee flavor) in water Meal 1: 2 mini cucumbers (to dip in tzatziki) 4 tbsp tzatziki 4 oz Dutch truffle gouda cheese 10 medium green olives 10 medium black olives Snack: 14 walnut halves 2 tbsp guacamole 1 tbsp chia seeds (in guacamole) Meal 2: Pulled pork (cooked plain with just spices) 4 oz 2 oz mousse du perigord (duck and pork liver mousse with herbs and gelatin) 1 oz alpine tubby cheese 160 g organic chopped spinach cooked (approx 1/3 whole foods 365 frozen bag) 2 tbsp organic cultured sour cream (swirled in cooked spinach) 1 cup cauliflower and broccoli mix (steamed) It might look like this is a lot, but the portions of each thing is small. Some days I have more other fats than cheeses, some days I eat more meats, some days I have more leafy greens. I wasn't a big meat eater before starting this, so adding meats is something I have to actively think to do. All the above amounted to: 1546 cal, 113 g fat (74%), 67 g protein (20%), 23 g net carbs (7%). I'm trying to lose a bit of weight so set that in the app. I was a good athlete up until getting ME and weighed 175 lbs. Over 5 1/2 years of ME, with all the metabolic problems it caused, not being able to exercise, and crashing, I gained 15 lbs. So I want to lose some weight so am only eating fewer calories.
I started this journey with a 48-hr fast in the middle of a crash in bed (ketogenic diet sites recommend such a fast). Only ate ~700 calories per day of ketogenic food, raw almond butter, kalamata spread, celery sticks. Didn't count anything because I was in middle of crash hell. I just slept, watched TV, slept, only ate small bites when I was hungry. After that I started feeling the standard way I always felt when slowly coming out of a crash, so nothing out of the ordinary. I then started the ketogenic diet in earnest and over the next 5 days it was gradually, like wow, oh, no way, can't believe it... symptom after symptom just improving consistently without crazy fluctuations. I never had symptom improvement ever, not really, just ME fluctuations that might last a couple hours. Life was just constant management of unwavering, nasty, debilitating symptoms. With the moderate severity of ME I have been in this entire summer I never went more than two days without crashing again, so I was 5 days in this diet and symptoms melting away and good energy, no fatigue, and no crashes! So now it's two weeks in and it's only getting better.
Hi all - here’s a good online keto macro calculator with good default settings and some advanced fields if you need to set special parameters: https://www.perfectketo.com/keto-macro-calculator/ For my body and ME disease state, the standard and recommended regimen of 5% net carbs / 20% protein / 75% healthy fats really did the trick.
Wanted to also add to this, I read or heard from a few other PWME here or on PR who had major improvements or remissions on a ketogenic diet and some said it took a few weeks to get to where I am. Everyone is different, particularly where each person’s ME disease state is and their comorbidities. That’s why it’s key to do blood monitoring of GKI to know if you are consistently in therapeutic ketosis or not. If that’s being consistently and accurately done then it’s just a wait and see how your body and ME will respond. To me it’s a no brainer given the horror that is ME. Everyone who can do this and doesn’t have any contraindications should try 150% and do this diet without fail for 1 month or so, all the while measuring GKI to make sure they are in deep ketosis. If after that time and doing the diet perfectly right nothing gets better then OK you tried, no harm done. But if someone never does it or does it half ass and it could have brought them into remission then that would be a shame. I am kicking myself that I didn’t realize I could have tried this 5 1/2 years ago! All that time through hell and all the damage that’s been done that I have to work to reverse now.
I remember your posts from when I was just beginning to find out what worked for me, @leokitten -- I'm so glad you're doing better!
@Trish, it seems to be relatively safe long-term: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716748/ You need to watch your electrolytes (especially potassium to avoid kidney stones) and keep hydrated, but your cholesterol should get better and you should lose wait. When I relied too much on dairy, my cholesterol and blood pressure went up. When I instead introduced more coconut oil and used small amounts of soya lecithin (which reduces cholesterol), those numbers went right back down again. Good oils are always preferable to other types of fat, and that includes cold olive oil and coconut oil for cooking.
