First time in remission with ketogenic diet

[sb4]

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.

I also think some of us don't achieve this easily due to gastroparesis. Almost every night I wake up feeling sickly because of the food still in the stomach. This implies my gut is still digesting food at night when it is meant to be empty, meaning a steady supply of protein/sugar is available for the liver.

 

[leokitten]

I also think some of us don't achieve this easily due to gastroparesis. Almost every night I wake up feeling sickly because of the food still in the stomach. This implies my gut is still digesting food at night when it is meant to be empty, meaning a steady supply of protein/sugar is available for the liver.

I had both gastroparesis and very slow esophageal motility during my first two years with ME. Both eventually and gradually went away. There were times during heavy crashes or PEM that they would come back somewhat, but never to the extent they existed during the first two years.

I had more and stronger symptoms during the acute phase and the beginning of the chronic phase. During this time certain acute phase symptoms gradually reduced or went away and other symptoms stayed the same, continued to slowly get worse, or new ones appeared during the chronic phase.

 

[Murph]

I've been looking into keto over the weekend and what I find confusing is the way it mixes up % of calories and grams.

Because each macronutrient packs a different number of calories per gram, it's challenging to figure out the proportions by weight each one should constitute in your meals. And of course the information available is a mix of caloric rules and weight rules, e.g. eat 25g of carbs per day and make sure 75% of your calories come from fat.

What's the best way to overcome this?

(nb also I've cut calories and dramatically cut carbs over the weekend and I have to say eating a high proportion of fats and protein instead has been sooo much easier than simply cutting back portion sizes and leaving some carbs in the diet. I feel a bit hungry but it's really very bearable so far. I don't think I'm in ketosis because I have felt fine all weekend.)

 

[WinterWren]

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.

This makes a whole lot of sense to me! I get major hypoglycemia symptoms with ALA and also from any high fat/low sugar diet like Paleo (I couldn't tolerate it at all). Same symptoms with both of them. I wish I could try a ketogenic diet .

High oxalate drinks also have a major effect on me and I'm assuming that could be related to pyruvate carboxylase impairment? Perhaps that's getting off topic.

I'm really glad you put this together even if it's just a guess, I think it's a good one.

 

[leokitten]

I've been looking into keto over the weekend and what I find confusing is the way it mixes up % of calories and grams.

Because each macronutrient packs a different number of calories per gram, it's challenging to figure out the proportions by weight each one should constitute in your meals. And of course the information available is a mix of caloric rules and weight rules, e.g. eat 25g of carbs per day and make sure 75% of your calories come from fat.

What's the best way to overcome this?

(nb also I've cut calories and dramatically cut carbs over the weekend and I have to say eating a high proportion of fats and protein instead has been sooo much easier than simply cutting back portion sizes and leaving some carbs in the diet. I feel a bit hungry but it's really very bearable so far. I don't think I'm in ketosis because I have felt fine all weekend.)

@Murph best way to go about things is to download a good keto app that will ask just a few questions about yourself to calculate your macro goals and to buy a blood monitor to calculate your GKI. Then you will know if you are doing things right, otherwise it’s just guess work.

Also, ketogenic does not equal just low carb.

ketogenic = low carb + adequate protein (no more) + high healthy fats

If you are eating tons of protein then you are likely not in ketosis regardless of the amount of carbs you’ve reduced. Also as mentioned, it’s a good idea to try and start with the fast so your liver will burn off all its glycogen stores, otherwise it will likely be a longer and more gradual process to get to ketosis.

 

[pamojja]

Because each macronutrient packs a different number of calories per gram, it's challenging to figure out the proportions by weight each one should constitute in your meals. And of course the information available is a mix of caloric rules and weight rules, e.g. eat 25g of carbs per day and make sure 75% of your calories come from fat.

Though only practicing low-carb - by singling out, eliminating or reducing those foods which caused high blood-glucose spikes - found the carb to fat ratio settles automatically. In the end the calories reduced do have to come from somewhere, which is better from healthy fats (since too much protein drives gluconeogenesis). Last time checked 6 years ago it was at 12% of kcal from carbs, 19% from protein and 69% from fats for me (=61g carbs, 99g protein, 158g fats). For me the higher fat content of my diet was more satiating then carbs ever were. And I naturally became satisfied with only 2 meals a day.

If you are eating tons of protein then you are likely not in ketosis regardless of the amount of carbs you’ve reduced. Also as mentioned, it’s a good idea to try and start with the fast so your liver will burn off all its glycogen stores, otherwise it will likely be a longer and more gradual process to get to ketosis.

Alas fasting, about 8 years ago tried a one week fast, these was my blood glucose thereby:

2. day - 83

3. day - 72

4. day - 100

5. day - 65 (at last..so I thought)

6. day - 101

Therefore in my case gluconeogenesis really only got into gears with that fast, because after that fast lost complete control over fasting glucose for a whole year, at about 128 mg/dl in average. Without counting that 1 year, I was at 99 mg/dl in average (9 years).

 

[JES]

This makes a whole lot of sense to me! I get major hypoglycemia symptoms with ALA and also from any high fat/low sugar diet like Paleo (I couldn't tolerate it at all). Same symptoms with both of them. I wish I could try a ketogenic diet .

High oxalate drinks also have a major effect on me and I'm assuming that could be related to pyruvate dehydrogenase impairment? Perhaps that's getting off topic.

I'm really glad you put this together even if it's just a guess, I think it's a good one.

Same here, when I take even 100 mg of ALA, I become so hypoglycemic I can barely keep awake without eating some carbs or sugar every few hours. I always thought this was strange, as many people on this forum can consume ALA just fine and I didn't find many reports about ALA intolerance. To me it would suggest that different mechanisms are behind this disease and it would indeed make sense that my reaction to ALA was due to already existing pyruvate dehydrogenase and glucose metabolism impairment.

I have personally not trialed a ketogenic diet, but I tried fasting a couple of years ago. The first 24 hours went relatively fine, but at around the 30 hour point I became so weak I could hardly walk, so I had to abort the fast. I think this doesn't bode well for the likelihood of a ketogenic diet working for me.

 

[Jackdaw]

How does the metabolic trap hypothesis and the theorised issue with fatty acid oxidation, fit in with this?

 

[bthompsonjr1993]

How does the metabolic trap hypothesis and the theorised issue with fatty acid oxidation, fit in with this?

Isn’t the issue supposed to be with amino acid oxidation?

 

[dannybex]

Same here, when I take even 100 mg of ALA, I become so hypoglycemic I can barely keep awake without eating some carbs or sugar every few hours. I always thought this was strange, as many people on this forum can consume ALA just fine and I didn't find many reports about ALA intolerance. To me it would suggest that different mechanisms are behind this disease and it would indeed make sense that my reaction to ALA was due to already existing pyruvate dehydrogenase and glucose metabolism impairment.

That sounds more like hyperglycemia instead of hypo...although I guess some of the symptoms can be somewhat similar. As for ALA, if it does make you hypoglycemic, it may be actually improving your use of glucose as a fuel. Also, just an FYI, many can't take more than 10-25 milligrams at a time without issues.

 

[dannybex]

@leokitten I'm sincerely glad to hear you're doing so well on a ketogenic diet. I'm considering some form of it myself as I've definitely been eating too high of a carb diet and have developed a fatty liver and dyslipidemia as a result. I had to go higher carb years ago because I couldn't tolerate fats, but am now able to handle an egg/day, plus some other fats, so hope to increase this -- and decrease the carbs at the same time. Personally I could not handle an 'instant' transition, even if the worsening was to last only 2-3 days.

I would caution however that in general, a quick search of the site will turn up others who did well at first, but then later on found they needed more carbs to keep from messing up their gut microbiome, which may cause even more problems such as increase food intolerances, and even MCAS issues.

It's worth noting that Paul Jaminet recovered from an MS-like illness using what he later named 'The Perfect Health Diet', which is primarily ketogenic, but allows for a larger amount of what he calls 'safe starches', because he developed scurvy when he went too low carb, and lost 25 lbs in the process. I'm not sure if he's got 'the answer', but I guess that's my point. No one really does. What works for one person may be quite harmful for someone else.

Having said that, I'm glad you've found at least some welcome relief, even if it's temporary. Who knows, it may indeed be THE thing that helps you stay well. And just think, no nasty drugs required.

 

[outdamnspot]

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.

FWIW I'm severe and couldn't tolerate ALA (even when I was 'moderate'), but have not had any issues with a Keto diet. That said, I went through the induction phase before I became completely bedridden.

 

[Gondwanaland]

Ketones improve muscle survival and mitochondrial function, including reduced production of reactive oxygen species.

http://www.mdpi.com/1422-0067/19/8/2247
Int. J. Mol. Sci. 2018, 19(8), 2247
β-Hydroxybutyrate Elicits Favorable Mitochondrial Changes in Skeletal Muscle

Abstract
The clinical benefit of ketosis has historically and almost exclusively centered on neurological conditions, lending insight into how ketones alter mitochondrial function in neurons. However, there is a gap in our understanding of how ketones influence mitochondria within skeletal muscle cells. The purpose of this study was to elucidate the specific effects of β-hydroxybutyrate (β-HB) on muscle cell mitochondrial physiology. In addition to increased cell viability, murine myotubes displayed beneficial mitochondrial changes evident in reduced H2O2 emission and less mitochondrial fission, which may be a result of a β-HB-induced reduction in ceramides. Furthermore, muscle from rats in sustained ketosis similarly produced less H2O2 despite an increase in mitochondrial respiration and no apparent change in mitochondrial quantity. In sum, these results indicate a general improvement in muscle cell mitochondrial function when β-HB is provided as a fuel.

 

[leokitten]

Hi everyone - sigh... well I just started recovering around midday today from a crash that started Sunday evening. Still trying to get my head around what happened, it's been a learning experience. So I went approx 2 weeks without crashing, which is a major first for me.

I always used to have all my symptoms increase/decrease fairly well together and they were barometers of how I was doing and whether I was headed for another crash. What made this crash really different and insidious is that, unlike every other ME crash I've had since I can remember, this one had almost no PEM, symptom exacerbation, or warnings leading up to it other than this subtle and slowly building fatigue over a couple days. All the other symptoms that went away or were greatly reduced on a therapeutic ketogenic diet did not come back and were not increasing to tell me a crash was coming.

Then like clockwork I got my immense pre-crash hunger just before crash hell broke loose. During the crash itself I also did not experience most of my typical ME symptoms except for the intense wipeout energy fatigue and weakness that really is the core a crash. The brain-related symptoms I experienced were just those of it needing to shut down and shut off, so for the first time without all the other worsening neurological and cognitive symptoms. I also slept relatively well each night of this crash which is a first.

It could be that I tried doing way too much too soon. I was trying to test how much mental and physical activity I could get to in order to test how well a therapeutic ketogenic diet would alleviate the symptoms of my ME. Though my cells were now able to produce energy through cellular respiration again, I might not have given my body enough time to repair possible damage done after 5 1/2 with ME (maybe I need to supplement to help mitochondria and respiration, maybe mitochondria numbers are down due to years of not using them very well).

It could be that impaired (or even downregulated) cellular respiration that is found in ME isn't the only piece of the puzzle. Is something else reducing energy utilization? Is it chronic immune activation causing cell defense signaling? Or, as I was thinking in the OP, the fact that the human brain still needs approx 30% of its energy demands from glucose, even on a therapeutic ketogenic diet, and since that cellular respiration pathway is still impaired in ME that it causes enough brain dysfunction to perpetuate some core aspects of the disease?

Since I can't update the OP anymore here are the updated ketogenic diet symptom improvements.

Symptoms that improved or went away on ketogenic diet (even through a crash):

No more muscle tremors
Fewer neurological problems
Balance problems are greatly reduced
No more visual blurring
No more tinnitus
Far reduced joint and muscle aches
No more ME flabby muscles
Hair stopped falling out so much
Sleep much improved
Cognition is like night and day
No PEM (except fatigue, see below)
Reduced fatigue (compared to a standard, healthy diet)

So far for me a ketogenic diet does not prevent:

Fatigue (eventually leading up to a crash if keep pushing)
Crashes
Crazy pre-crash hunger

So i'm restarting the ketogenic diet journey today and will continue to report. I also very much welcome any thoughts and advice...

 

[skwag]

@leokitten,

It's interesting you bring up the pre-crash hunger. I believe I experience the same. For me it is definitely a carbohydrate craving, but I feel like I'm already in a partially crashed state when the craving arrives. A number of times, I've binged on carbs in this state. For me it does no good, and just makes my POTS worse. It does not seem to give me any of the energy I thought it would. Knowing this now, I try my best not to succumb to these pre-crash cravings. Sometimes, sucking on some rock salt helps alleviate the craving for me.

 

[leokitten]

@leokitten,

It's interesting you bring up the pre-crash hunger. I believe I experience the same. For me it is also definitely a carbohydrate craving, but I feel like I'm already in a partially crashed state when the craving arrives. A number of times, I've binged on carbs in this state. For me it does no good, and just makes my POTS worse. It does not seem to give me any of the energy I thought it would. Knowing this now, I try my best not to succumb to these pre-crash cravings. Sometimes, sucking on some rock salt helps alleviate the craving for me.

Hi @skwag mine is the exactly same, very much a ravenous carbohydrate craving and it comes on fairly quickly. Our symptoms are identical, I also feel like I'm already partially crashed by the time the craving arrives, maybe it should be called early crash cravings. Actually the first two days of most of my crashes I am constantly hungry for carbohydrate laden comfort food (though not as severe as the early crash craving) and always one early sign that the crash is going away is that feeling completely stops. Then I come back to normal hunger until the next crash, it's always the same.

 

[Eastman]

Biotin is needed for gluconeogenesis and may be especially important for those on a ketogenic diet.

Consumption of a low-carbohydrate and high-fat diet (the ketogenic diet) exaggerates biotin deficiency in mice

 

[Gondwanaland]

Biotin is needed for gluconeogenesis and may be especially important for those on a ketogenic diet.

Consumption of a low-carbohydrate and high-fat diet (the ketogenic diet) exaggerates biotin deficiency in mice

@Lolinda experienced a lot of mineral / vitamin depletions in the KD esp. B5 if I am not mistaken

 

[ljimbo423]

It could be that impaired (or even downregulated) cellular respiration that is found in ME isn't the only piece of the puzzle. Is something else reducing energy utilization? Is it chronic immune activation causing cell defense signaling?

It's my view that chronic low grade immune activation and the increase in oxidative stress from the chronic immune activation, is what causes the dysfunction in the mitochondria.

The immune system when activated produces ROS to kill off pathogens.

I think it's those ROS that impair the mitochondria. Mitochondria are very sensitive to ROS and can become dysfunctional, to varying degrees, according to the level of ROS and how long the ROS levels have been high.

The longer the levels of ROS have been high, the more mitochondrial dysfunction and the more depleted our antioxidant defenses become.

By the way, I also experience intense carb cravings just before or during crashes. I tried to fix that for years with cookies, cakes, donuts etc, which helped for about 30 minutes, then I was rate back on the same merry-go-round.

Now I just wait it out or have a healthy snack of some kind.

 

[leokitten]

Hi @ryan31337 - did you experience any crashes after starting your ketogenic diet and during this year of big improvements you've had from it?