First time in remission with ketogenic diet

[leokitten]

I deeply regret getting drawn into low carbing. I hope I can recover from the damage it caused me, to my gall bladder, liver, pancreas and insulin sensitivity. I have heard quite a few others say they were made worse by keto/very low carb. I think it messed up my gut biome as well due to low fibre.

I did well for a few months but later began to deteriorate and had sugar cravings, weight gain and worse cognitive functioning.

I am now plant based whole food, no salt sugar or oils and doing well. No cravings and I have been able to give up cocao even 100% chocolate.

I am not going to debate with anyone but just wanted to put the opposite side of the debate on here for those who want to look further into it and not just jump on the bandwagon.

... ...

I no longer crash and have plenty more energy.

Hi @brenda - I did an excellent vegan diet just over two months in 2013 as one of my first protocols to try and understand and fight my ME. It did absolutely nothing for my symptoms nor the disease process, I just continued to get worse and it had no impact.

Also, just because one does low carb does not mean they are stuck doing low fiber. On the contrary, on a ketogenic diet you are encourage to eat as much fiber as you can. That's why the diet says you consume typically 25g net carbs per day, it's full carbs minus fiber consumed. Fiber doesn't contribute to calories, blood sugar, etc, it's consumed by your gut bacteria. I really think many people go about this diet wrong...

Sorry to ask a personal question, but now, on your vegan diet, what percentage of your pre-ME/healthy capacity are you? Are you working again? The reason I ask is I've seen quite a number of posts discussing vegan diet and ME, though no one ever went into remission or near remission.

I've gone from being moderate severity ME (mostly housebound and bedbound, only leaving house very infrequently) to what I would say 80% pre-ME capacity in 2 weeks. Now that I'm in my first remission and feel what its like to be in remission, I can see that I have a lot of ME-related cumulative damage to undo. I still have some minor glitches, I'm sure my body and cells are working on to repair now that it has the energy to do so. For this reason I do not yet feel back to 100%.

ME is slowly destructive to one's body, it adds more and more comorbidities the longer you have it. I do not believe what others have written that, due to stories of spontaneous remissions, that ME does no cumulative damage. Trust me, it does.

 

[leokitten]

sorry the image is so big, I tried to fix it but wow that is past my current cognitive abilities at the moment!*

Hi @lafarfelue - thank you.... to make the image smaller I believe you have to do it before you upload it to PR. For example in Windows, you can resize the image to make it fewer megapixels. Typically like 0.5 MP is good if you want to display the full image in your post in PR, otherwise 1-2 MP is good if you want to display the thumbnail in your post and let people enlarge it when they click. Then you upload it to PR and do as you did to display full image.

 

[brenda]

@leokitten
There are many interpretations of the vegan diet - you can eat oreo's and coke and be vegan. I think with this one, it is the no sos (salt oil sugar) that makes a big difference and there are quite a few in the plant based communities that had ME and are now fully functioning. I think it takes some time to get there though.

I did have a very good response to AIP low carb and 5 of my autoimmune conditions cleared but as I said, things began to go downhill. Too much animal protein is bad for kidney function and low fibre for the microbiome. There have been many studies on the superiority of plant based but no long term, meaning years, on the low carb diet. Yes keto cures childhood seizures but what damage does it do?

I am having much more energy on high carb. At my worst I have been bedbound. I can work around the house for 4 hours and no longer need to rest in bed through the day and can go out on consecutive days which I could not do before though could on low carb for a while. I would say I have gone down to 4 on the scale.

I could not raise myself out of the bathtub for years but my upper body has strengtherned so much that now I can do it. I did not gain that on low carb.

I certainly know about co morbilities having had ME for over 60 years. It is amazing how the body can heal though. My neuropathy in the feet is going away but I had some sharp pains there which I assume are the nerves healing.

 

[leokitten]

@leokitten
I did have a very good response to AIP low carb and 5 of my autoimmune conditions cleared but as I said, things began to go downhill. Too much animal protein is bad for kidney function and low fibre for the microbiome. There have been many studies on the superiority of plant based but no long term, meaning years, on the low carb diet. Yes keto cures childhood seizures but what damage does it do?

You were not doing a ketogenic diet @brenda. Ketogenic != low carb

EDIT:

You are supposed to eat a lot of fiber on a ketogenic diet. There are many sources in ketogenic food. On a ketogenic diet you are only supposed to eat adequate protein, i.e. 20% daily calories, or 1g per kg of lean body weight (total body weight * (1 - body fat % / 100)), or 1g per kg body weight (different sites say differently about what is human adequate protein)

I think the best is the 5% net carb 20% protein 75% healthy fats macro breakdown, doing glucose and ketone blood monitoring to ensure a good GKI, and then adjusting macros accordingly if you aren’t seeing therapeutic ketosis numbers.

 

[brenda]

I followed Dr Wahls diet for the first 6 months but could not go fully keto because my thyroid got worse when I did so was eating more carbs in the way of sweet potatoes but did not want to bring the amount of grains in that she advised. Then I went AIP. High fat wrecked my gall bladder and pancreas.

 

[leokitten]

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 my 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.

 

[bthompsonjr1993]

You were not doing a ketogenic diet @brenda. Ketogenic != low carb

You are supposed to eat a lot of fiber on a ketogenic diet. There are many sources in ketogenic food. On a ketogenic diet you are only supposed to eat adequate protein, i.e. approx. 25% daily calories and 1g per kg of lean body weight (total body weight * (1 - body fat % / 100))

I am very excited by the keto diet and your story of what it has done for you, but sorry, those numbers for protein just don't add up.

I weigh 67kg, so if I ate 67 g of protein a day (which is even more than I would be eating if I just used my lean body mass, like your formula suggested), that would be 268 calories a day from protein, and if that was 25% of my daily caloric intake, as your guidelines suggest, that would mean I would be only eating 1,072 calories a day, which is nowhere near enough to sustain me in a healthy way.

 

[leokitten]

I am very excited by the keto diet and your story of what it has done for you, but sorry, those numbers for protein just don't add up.

I weigh 67kg, so if I ate 67 g of protein a day (which is even more than I would be eating if I just used my lean body mass, like your formula suggested), that would be 268 calories a day from protein, and if that was 25% of my daily caloric intake, as your guidelines suggest, that would mean I would be only eating 1,072 calories a day, which is nowhere near enough to sustain me in a healthy way.

I edited the above reply to brenda, I meant 20% protein not 25%. Please read here for rest of clarification...

Sorry maybe there was some confusion. I calculated it for you on my keto app, here's what I entered for you:

Male
67 kg = 148 lbs
15% body fat
Sedentary person
Looking to maintain weight

2027 calories daily
75% fat = 169 g
20% protein = 101 g
5% net carbs = 25 g

Apologies, some keto sites say 1g protein per kg body weight, some say 1g per kg of lean body weight, some say just always make daily calories 5% net carbs, 20% protein, 75% fat.

The most important thing to remember is staying at 25 g net carbs and eating adequate protein (not too much that would trigger gluconeogenesis in the liver) and the balance with healthy fats. So the 5 / 20 / 75% rule is probably the best.

You will always know either way if you are doing it right if you do glucose and ketone blood monitoring, and can tailor macros to your specific body such that you maintain a GKI of 2 or under.

Hope this helps and makes more sense. Download a ketogenic diet management app like the one I have (Keto.app) which will do all the numbers for you.

 

[Murph]

You inspired me to cut back carbs. ( I currently weigh about 8kg more than I should so it was time to do *something* anyway).

I'm now up to 24h without having a big fat carbo feast. I felt a bit off overnight (woke up 5am) but fairly sharp today. I think a six week regimen should be enough to lose 4kg and get me halfway there. So I'm ~2% of the way there!

I've cut carbs back before and I think a lot of it has to do with a mental state that says feeling a little bit hungry isn't a crisis. Instead of going for a snack, just settle into it. It often goes away or at least doesn't get worse.

For me, I'm not sure full keto is the answer as I've had such positive results from eating a lot of whey powder, and I'm concerned what might happen if I cut my protein intake dramatically. (Having so much whey powder every day is what has made me fat - I get a lot of calories from it and hadn't cut back on meals...) Fingers crossed low carbs yields benefits both health-wise and weight-wise.

 

[leokitten]

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 state, the standard and recommended regimen of 5% net carbs / 20% protein / 75% healthy fats really did the trick.

 

[bthompsonjr1993]

I edited the above reply to brenda, I meant 20% protein not 25%. Please read here for rest of clarification...

Sorry maybe there was some confusion. I calculated it for you on my keto app, here's what I entered for you:

Male
67 kg = 148 lbs
15% body fat
Sedentary person
Looking to maintain weight

2027 calories daily
75% fat = 169 g
20% protein = 101 g
5% net carbs = 25 g

Apologies, some keto sites say 1g protein per kg body weight, some say 1g per kg of lean body weight, some say just always make daily calories 5% net carbs, 20% protein, 75% fat.

The most important thing to remember is staying at 25 g net carbs and eating adequate protein (not too much that would trigger gluconeogenesis in the liver) and the balance with healthy fats. So the 5 / 20 / 75% rule is probably the best.

You will always know either way if you are doing it right if you do glucose and ketone blood monitoring, and can tailor macros to your specific body such that you maintain a GKI of 2 or under.

Hope this helps and makes more sense. Download a ketogenic diet management app like the one I have (Keto.app) which will do all the numbers for you.

Wow, awesome, thank you for that! I can’t wait to give it a try, and am so happy it has helped you so much. Of all the treatments I have come across on this forum over the years, a truly, fully strict keto diet seems to have had the most success. Can’t wait to give it a go

 

[skwag]

This is a really fantastic presentation on the subject if you haven't seen it before:

Ryan

Thanks for linking this video. Very informative and probably not well known at all. My doc, who specializes in POTS, made no connection between my POTS and the postprandial hypoglycemia that she also diagnosed,

I also just wanted to say my symptoms are strikingly similar to those of @ryan31337 . The ketogenic diet has been extremely helpful. I still have some POTS symptoms going on but the severity is way down. I've found that intermittent fasting also helps and is not all that hard once you are in ketosis. I generally have a 4 to 6 hour eating window. I find that if i eat too early in the day, my POTS symptoms spike, so my eating window is in the evening.

I also experimented with longer term fasting. Up to four days. After a few days of fasting my POTS completely disappears as far as i can tell. Obviously this isn't sustainable, but it does reinforce the connection between the gut and other POTS symptoms, at least in some of us.

 

[Rlman]

@brenda did your autoimmune illnesses come back on the current plant diet you are on? does no sugar mean no fruit too or just artificial sugar?

 

[leokitten]

For those vegans and vegetarians following this, you can actually do a vegan or vegetarian ketogenic diet. Please look on the web and you will find a trove of information on this.

Realistically yes I understand it would make an already somewhat restricted diet more restricted, but just wanted to put it out there that it is generally feasible.

 

[brenda]

@brenda did your autoimmune illnesses come back on the current plant diet you are on? does no sugar mean no fruit too or just artificial sugar?

Just the interstitial cystitist has been niggling lately so I have recently quit nightshades. There is some inflammation going on so I am trying to hack it, but it is not stopping an increasing improvement.

No sugar includes honey, maple syrup, artificial sweetners and coconut sugar but fruit can be eaten freely although fruit juice is not considered compliant.

 

[leokitten]

Yesterday I attempted to test a more physically and mentally active day. This was the first time I've done such a test since starting this journey.

I drove :thumbup: my spouse and I 45 min in heavy traffic to an appointment, had conversation with others during that time for over an hour, drove us back 45 min to meet my parents at Whole Foods to shop and eat at the sitting area, then all of us came back to our place to sit and have conversation for 2 hours. All of this with plenty of walking, stimulation, light, hot weather, etc.

When I was mild severity ME I could push myself hard and unwillingly to do the above, but it would be constant trying to ignore the symptoms and pain the entire time and they would build and get worse until I couldn't take it anymore. More importantly, it would definitely cause a PEM payback either the same day or a big surge the next day. In mild severity ME, overexertion events like these when done on days too close to each other would accumulate and definitely lead to a crash. That's how work had been for years, each work day pushing as hard as I could and it building until the end of the week my brain and body were on fire, symptoms were screaming, and I would crash.

Since I've been moderate severity this summer such a multi-event day would be totally impossible. I could push hard to do only the car trip to the appointment, with sunglasses on and spouse driving, but the round trip with conversations in the middle and stimulation would later trigger major PEM or crash after we'd returned. If I were forced to do more than that at once I would definitely have typically a four day crash before slowly coming back from hell.

Yesterday after all that I had zero PEM, zero symptoms. The only thing that I can remark on is that my sleep was as great as the previous days, except while asleep early in morning I got a very faint reminder of my gut/abdomen irritation symptom causing me to wake up a little. But on a gut/abdominal attack symptom scale of 1-10 when 10 was almost every night of ME before 2 weeks ago, this would be a 1 or 2.

Today, even with that faint symptom reminder, I woke up refreshed and only groggy for a few minutes. I went for a 1 hour walk on another hot day with mixed sun and under trees. Again no symptoms, no PEM at all and payback from both days doesn't seem to be coming...

What I can tell you is that having ME for 5 1/2 years damage has definitely accumulated, my muscle and bones are weak, my brain is needing to start over. I feel it. My brain is awake again but I can tell it's going to take some time to heal the damage ME has done. I'm re-learning how to use my senses properly again, how to walk properly, how to think, etc.

If the ketogenic diet keeps me in remission indefinitely, or close to remission, then it's going to be a long road to get back to 100% pre-ME health, if that will even be possible. But I feel extremely lucky, and that's all it is, I just got lucky at least for now.

 

[nandixon]

Dear @Janet Dafoe (Rose49),

Based on the research your spouse Dr. Davis and you have been doing, along with other labs, which discovered that it's likely PDH function in ME/CFS is severely inhibited there are quite a few of us that have had huge improvements and remissions on a fully ketogenic diet. Though we haven't yet heard many stories of severe or very severe patients using this diet, possibly due to communication difficulties. I want to thank you for all the work you've been doing, those findings have definitely given us clues to try and turn this disease around.

Have you thought of the possibility of introducing a nutritionally complete ketogenic enteral feed for your son? E.g. https://myketocal.com/ and tube feeding directions https://myketocal.com/directions.aspx. It's seems to be commonly done for pediatric epilepsy patients.

I can't find the post/video(?) now but I'm fairly certain that Ron Davis mentioned (within the last year?) that it appeared that a significant number of their severe patients may have an impairment of the pyruvate carboxylase enzyme. (I'm not sure if this was in addition to or instead of any possible inhibition of the pyruvate dehydrogenase complex…?) If that's true then a ketogenic diet may be intolerable for such patients, especially during the induction phase but on an ongoing basis as well because of insufficient support from gluconeogenesis, which always needs to be working at some level even though a goal of a ketogenic diet might be too minimize it.

Along these lines, I've been wondering if a person's tolerance to alpha lipoic acid (ALA) may be a fair indicator as to possible success with a ketogenic diet, at least for some ME/CFS patients. ALA inhibits gluconeogenesis on the one hand (by, e.g., sequestration of acetyl-CoA) but helps activate pyruvate dehydrogenase on the other. So if a person can tolerate a large dose (e.g., 600mg) of ALA then a significant impairment of pyruvate carboxylase (and gluconeogenesis) seems less likely and perhaps a ketogenic diet may be more tolerable. Just a guess.

 

[sb4]

@nandixon Interesting. I have previously speculated that I could have a pyruvate carboxylase issue thanks to my intolerance to ketosis (ever since getting worse) however I have been taking ALA recently at doses of 1g and seem to tolerate this ok.

 

[leokitten]

I can't find the post/video(?) now but I'm fairly certain that Ron Davis mentioned (within the last year?) that it appeared that a significant number of their severe patients may have an impairment of the pyruvate carboxylase enzyme. (I'm not sure if this was in addition to or instead of any possible inhibition of the pyruvate dehydrogenase complex…?) If that's true then a ketogenic diet may be intolerable for such patients, especially during the induction phase but on an ongoing basis as well because of insufficient support from gluconeogenesis, which always needs to be working at some level even though a goal of a ketogenic diet might be too minimize it.

Along these lines, I've been wondering if a person's tolerance to alpha lipoic acid (ALA) may be a fair indicator as to possible success with a ketogenic diet, at least for some ME/CFS patients. ALA inhibits gluconeogenesis on the one hand (by, e.g., sequestration of acetyl-CoA) but helps activate pyruvate dehydrogenase on the other. So if a person can tolerate a large dose (e.g., 600mg) of ALA then a significant impairment of pyruvate carboxylase (and gluconeogenesis) seems less likely and perhaps a ketogenic diet may be more tolerable. Just a guess.

That's a very good point @nandixon, here's a couple depictions I found on Google highlighting what you wrote:

The red line reaction pointing from pyruvate to oxaloacetate in the top figure is catalyzed by pyruvate carboxylase. The bottom figure shows it in more detail.

Also, to add my data point, I've never had any intolerance to ALA, and took it for a couple years on and off as part of one of the many protocols I was trying to find some improvements.

 

[anne_likes_red]

I absolutely feel best with a ketogenic diet but I generally only reach therapeutic ketosis when I have a max of 20 grams total carbs...so not much! I have more carbs in the summer and always feel when I go back to lower levels in the fall it's more difficult for me (takes longer) than it should to adapt back to fat burning. We're supposed to, best case scenario, enter a mild state of ketosis every night. I've wondered based on my own experience if PWME (a subset anyway) don't achieve that so easily.
The ALA connection is interesting. Thanks nandixon.