Has anyone else done a therapeutic ketogenic diet religiously long-term (like over 1 year or more)? How have your results compared to my long-term update? Also very importantly, are you still working even part-time during this time and not able to adaptive rest and pace as much or are you able to control your exertion most days?
First time in remission with ketogenic diet
- Thread starter leokitten
- Start date
@leokitten
have you tried carb cycling?
ie, 30-50 grams carbs most days and <100 grams carbs 1-2 days a week or every other week? I've found this very helpful.. I feel way better doing carb cycling (energy-wise and cognitively) than doing low carb (defined as 30-50 grams carbs) every single day.
have you tried taking C8 oil as a fat?
e.g., Bulletproof Brain Octane, but there are other brands... This helps my cognition a LOT, and seems to make getting into ketosis easier... I feel more relaxed on it... Whatever the benefits to my brain, it helps overall pain, too.
have you tried taking Cod Liver Oil?
e.g, Carlson... it's high in omega 3's and has vitamin D/A/E... I've taken D and omega's separately, but for some reason, I feel SO much better taking CLO.. I think that natural forms of the fat soluble vitamins is beneficial for me, and taking them together has a synergistic effect... The Vitamin A really helps my brain fog (as do the omegas, vitamin and prob vitamin e, but A really knocks out the pressure behind my eyes and sinus problems... I suspect this affects the front of my brain, too, and some kind of central sensitization (?) issues...)
eating low carb and using Brain Octane is expensive.... but when I have the money, this is how I do keto, after a LOT of trial and error... hang in there!
Last, have you seen any research on coconut oil benefits vs animal fats? they're both saturated, but I'm wondering if coconut is better... The paleo sites are full of so much junk science, and I'm looking for something solid... thx.
have you tried carb cycling?
ie, 30-50 grams carbs most days and <100 grams carbs 1-2 days a week or every other week? I've found this very helpful.. I feel way better doing carb cycling (energy-wise and cognitively) than doing low carb (defined as 30-50 grams carbs) every single day.
have you tried taking C8 oil as a fat?
e.g., Bulletproof Brain Octane, but there are other brands... This helps my cognition a LOT, and seems to make getting into ketosis easier... I feel more relaxed on it... Whatever the benefits to my brain, it helps overall pain, too.
have you tried taking Cod Liver Oil?
e.g, Carlson... it's high in omega 3's and has vitamin D/A/E... I've taken D and omega's separately, but for some reason, I feel SO much better taking CLO.. I think that natural forms of the fat soluble vitamins is beneficial for me, and taking them together has a synergistic effect... The Vitamin A really helps my brain fog (as do the omegas, vitamin and prob vitamin e, but A really knocks out the pressure behind my eyes and sinus problems... I suspect this affects the front of my brain, too, and some kind of central sensitization (?) issues...)
eating low carb and using Brain Octane is expensive.... but when I have the money, this is how I do keto, after a LOT of trial and error... hang in there!
Last, have you seen any research on coconut oil benefits vs animal fats? they're both saturated, but I'm wondering if coconut is better... The paleo sites are full of so much junk science, and I'm looking for something solid... thx.
@ebethc thanks for message, but you really didn’t answer my questions 
which I’m really interested in knowing from people who’ve tried this diet long term. Here I’ll ask the questions again in more detail:
Have you been doing this long-term a year or more? How long?
How much improvement have you seen? Be as detailed and quantitative as you can, and qualitative where you can’t.
What was your ME severity level before the diet and now long-term with the diet? If you were mild-to-moderate or moderate severity before has it improved enough where you can exert enough on a continual basis to work again even part-time? If you were more severe before has it helped you spend less time in bed and able to do more around the house?
I want to understand really and quantitatively how much or not it’s helped people. I generally don’t see people writing about this in their posts but people tend to be more general or just say “it’s helped me”. Well then by how much and give us detailed information enough so we can see quantitatively how much.
which I’m really interested in knowing from people who’ve tried this diet long term. Here I’ll ask the questions again in more detail:Have you been doing this long-term a year or more? How long?
How much improvement have you seen? Be as detailed and quantitative as you can, and qualitative where you can’t.
What was your ME severity level before the diet and now long-term with the diet? If you were mild-to-moderate or moderate severity before has it improved enough where you can exert enough on a continual basis to work again even part-time? If you were more severe before has it helped you spend less time in bed and able to do more around the house?
I want to understand really and quantitatively how much or not it’s helped people. I generally don’t see people writing about this in their posts but people tend to be more general or just say “it’s helped me”. Well then by how much and give us detailed information enough so we can see quantitatively how much.
@leokitten
1) The diet works well for me when I do carb cycling, use C8 (brain octane) and take Cod Liver Oil. The fats REALLY count... ie, C8 is WAY better than coconut oil.
2) specific carb grams are stated above
3) typical macros = 60% fat; 10% carbs; 30% protein ... I started higher fat, (based on guidelines for keto diets rx'ed for MS patients per research in Pubmed) but it was too much for me, so I scaled it back down to 60%. Experimenting with WHICH fats are best for you cannot be overstated, IMO.
I'm not going to quantify b/c it would be nonsense....
1) There are too many variables with this illness... e.g.:
For the first time, I feel completely normal between the CFS inflection points... e.g., after the covid/cfs flare, i was doing keto and felt normal and even great for the first time in years... I really bounced back to a better state than back to a crappy baseline.... After the wildfire pollution/sinus infection, I'm now bouncing back and feel normal. 2 long walks today, and feel refreshed and relaxed, not achey and exhausted...
The right fats really help my aches and pains, which then helps my fatigue. Cod Liver Oil has been amazing... I read in Pubmed that Vitamin A gets depleted w illness but your body needs it to recover from illness.. But, I can't tell you w absolute "100%" certainty that Vitamin A will work for you and make you "100%" better every day.
Keto has been significant for me, but I've done a LOT of tuning and tweaking over the past 1.5 yrs. (even more than I've mentioned here, but you don't seem interested...)
1) The diet works well for me when I do carb cycling, use C8 (brain octane) and take Cod Liver Oil. The fats REALLY count... ie, C8 is WAY better than coconut oil.
2) specific carb grams are stated above
3) typical macros = 60% fat; 10% carbs; 30% protein ... I started higher fat, (based on guidelines for keto diets rx'ed for MS patients per research in Pubmed) but it was too much for me, so I scaled it back down to 60%. Experimenting with WHICH fats are best for you cannot be overstated, IMO.
I'm not going to quantify b/c it would be nonsense....
1) There are too many variables with this illness... e.g.:
- I did a similar diet a few years back when I was much sicker, and it didn't have much effect ... when I'm like that, I just need a lot of rest... nothing else matters when I'm that broken...
- My gut is much better now, too.... the diet to heal your gut may not be the same diet to fix your broken energy / metabolism / nervous system / etc.
- I had covid for 6 wks this year, followed by a 6 wk cfs flare. worst joint pain of my life.
- The wildfires here in cali in august/september made me really sick (particulate matter are a big trigger). I got a sinus infection.
For the first time, I feel completely normal between the CFS inflection points... e.g., after the covid/cfs flare, i was doing keto and felt normal and even great for the first time in years... I really bounced back to a better state than back to a crappy baseline.... After the wildfire pollution/sinus infection, I'm now bouncing back and feel normal. 2 long walks today, and feel refreshed and relaxed, not achey and exhausted...
The right fats really help my aches and pains, which then helps my fatigue. Cod Liver Oil has been amazing... I read in Pubmed that Vitamin A gets depleted w illness but your body needs it to recover from illness.. But, I can't tell you w absolute "100%" certainty that Vitamin A will work for you and make you "100%" better every day.
Keto has been significant for me, but I've done a LOT of tuning and tweaking over the past 1.5 yrs. (even more than I've mentioned here, but you don't seem interested...)
Frunobulax
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I strongly disagree. This opinion is based on fundamentally flawed research from the 50s, and has been invalidated a thousand times since then.
Somewhat simplified: The atherosclerotic plaques are part of a repair mechanism of the organism to combat inflammation-based damage to the arteries. Cholesterol has the function of the band-aid preventing further harm. And the band-aid is quite innocent, it does not cause the injury. Removing band-aids does not prevent anything. If you remove cholesterol, people will have less thrombosis (hence a reduction in CVD disease), but die more often from other causes.
More scientifically:
We do know that saturated fats increase the cholesterol levels. That is, it increases the volume -- it does NOT increase the number of cholesterol molecules. In fact, the main cholesterol increase comes from an increase in healthy HDL. However, there never was any evidence that higher cholesterol is harmful to all-cause mortality. On the contrary, there are numerous studies that higher cholesterol will increase longevity. And I could quote dozens of studies supporting this.
All "cholesterol lowering" diets have in fact increased all-cause mortality, as can be seen for example from the MRFIT study, one of the largest and most expensive nutrition studies in history. Typically, a minor reduction in CVD deaths has been offset by a much larger increase in mortality from other causes.
I think this video sums it up quite well:
More resources:
https://doi.org/10.1080/17512433.2018.1519391
https://bmjopen.bmj.com/content/6/6/e010401
https://healthinsightuk.org/2019/10...ocent-how-the-real-killers-were-tracked-down/
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Frunobulax
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1 year, 10 months.
I was diagnosed as 30 on the bell scale, and that was quite optimistic. Reduced to 1-2 hours of desk work, with long breaks. No physical activity at all. Mostly bedridden. One shopping trip to the supermarket 300m (350 yards) away would exhaust my reserves for days. A crash would affect me for weeks.
Today I'm back to working part-time (4h a day desk work, and I used to travel to work daily before COVID-19). Can do walks up to 90 minutes, or bike for 5-6km (3-4 miles).
Improvement was visible about 1 month after going on low-carb, and became more pronounced when I started to avoid oxalates and lectins. Have been pretty stable for the last year or so. Most importantly, I'll still crash if I overdo things, but I'll recover within 48 hours after a crash.
Edit: Today I'm doing a mix that could be summarized as mostly keto (with some carb days), mostly paleo (I do consume some tea/coffee and dairy, especially dairy fat), low in lectins/oxalates and limited in fodmaps. Still slowly losing weight, about a pound a month. I was pretty overweight at 110kg/240lbs (at 1,80m/5ft 11) and now I'm down to 90kg/200lbs.
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I’ve read through a few of the papers looking at LDL in keto recently and the subtypes of LDL because some people here on PR were saying high LDL being bad in keto is a myth, so wanted to know more.
There is some scientific evidence on one side of the agreement that suggests it’s not LDL levels that are concerning when it comes to keto. Some of what I read in these paper and wrote in this paragraph repeats info others told me but there is one new point. 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. Pro-keto evidence says it’s both the size and density 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 other diets they are smaller and much more oxidized, which is 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 an interesting starting point if you can access it:
The ketogenic diet: Pros and cons. O’Neill et al. Atherosclerosis (2020)
There is some scientific evidence on one side of the agreement that suggests it’s not LDL levels that are concerning when it comes to keto. Some of what I read in these paper and wrote in this paragraph repeats info others told me but there is one new point. 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. Pro-keto evidence says it’s both the size and density 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 other diets they are smaller and much more oxidized, which is 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 an interesting starting point if you can access it:
The ketogenic diet: Pros and cons. O’Neill et al. Atherosclerosis (2020)
Also fat-soluble vitamins, with the exception of tocotrienols.
Murph
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@leokitten, here we are six months after your last update. Still on keto? Any better/any worse?
I stopped doing keto around late 2019. I posted and update from 2019 months later here in 2020 so sorry for confusion.
Too difficult a treatment to keep up for benefits that reduced over time and doesn’t prevent crashes. Yes first few months were great but then stopped working as well.
Low dose Abilify works way better than keto
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godlovesatrier
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Nice, how long you been on Abilify @leokitten ? Hipsman seems to be doing well on this too.
xebex
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@leokitten yes I discovered the same thing, I was strict keto for 10months and I got worse and worse on it despite the first two months feeling better. Everyone kept saying it’s your electrolytes! I was taking all the suggested electrolytes at the correct levels and still got worse. I often wonder if it damaged the muscles in my back as now, 2 yrs later I’m still having the same muscle fatigue problems that came about whilst doing keto.
For me I find moderate carb intake the best along with daily 14-16 hour intermittent fasting. Stop all carbs after 6pm or will feel significantly worse, to me it’s about what the carbs are and when you eat them rather than how many you eat.
For me I find moderate carb intake the best along with daily 14-16 hour intermittent fasting. Stop all carbs after 6pm or will feel significantly worse, to me it’s about what the carbs are and when you eat them rather than how many you eat.
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Im the same, IF works well at temp improving ME symptoms and just not going crazy with carbs especially as night. But since being on Abilify none of that matters it works regardless of IF or carb intake.
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Almost 4 months
godlovesatrier
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That's great it works for you and no tolerance has built up? Even better.
Not much so far, my improvements plateaued about 1 1/2 months into taking 0.5 mg so everyday I wonder if the bottom is going to drop out but hasn’t happened yet.
xebex
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@leokitten that’s great news! How much improvement have you made due to ablify?
From completely bedridden 23 hours a day (moderate-severe) unable to take much stimuli or mental exertion to now able to function around the apartment the entire day doing tasks and taking in stimuli without needing recovery time as well as able to leave the house to drive or walk a bit almost every day (mild-moderate severity I would say). I don’t dare do significant physical exertion but mental exertion threshold is greatly increased and I don’t get any significant PEM from it anymore (though I haven’t pushed the regular limits of mental exertion like doing some kind of difficult timed exam, just regular mental exertion seems not to generate PEM anymore).
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xebex
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That’s great news!
godlovesatrier
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What an amazing drug - congrats!