Ketogenic diet

[Arnie Pye]

Yeah, I was keto for around 6-7 weeks maybe, including a stint of carnivore. It helped my heart pounding after eating (as this is triggered by carbs)

I have a pounding heart after eating carbs too, and the more carbs and sugar I eat the worse the pounding is. Along with the pounding my heart rate rises, sometimes quite dramatically. My HbA1c was 43 when last tested. Normal range was 29 - 42, so I'm officially pre-diabetic. But I would get the pounding heart when my HbA1C was quite a bit lower, and I've come to the (untested) conclusion that the heart pounding after eating carbs is an indicator of the insulin resistance which usually precedes type 2 diabetes. I have some of the symptoms of "metabolic syndrome" too.

Perhaps you should take the heart pounding after eating carbs as an early warning sign and get yourself tested for diabetes.

 

[andypants]

I did keto for quite a while. Like Hutan, my experience was that it gave me a bit more room before PEM and generally lowered inflammation.

I eventually allowed more healthy carbs like carrots and gave myself more leeway with other foods like the occasional pizza. That worked well for a while, but with summer and moving and everything I let it slide too much. I now have more trouble with inflammation again and feel worse overall.

This is in addition to being more severe this time of year, and there’s chaos at our house because we’re renovating, and doctor stuff, but the diet isn’t helping. I’ve taken some steps to get back on track with keto, but it will probably take me a while because of everything else that’s going on.

I will work towards keto again though, as it did help me feel better.

 

[sb4]

@Arnie Pye Yeah, I think dysautonomia and diabetes are linked. I have tested my BG after very high carb meals 200g, very low fat / protein, and sometimes it enters the diabetic range and stays in for a while, other times it doesn't go in at all. Bare in mind that the diabetic range is set for 75g glucose so not really sure what to make of it.

 

[leokitten]

I'm still sticking with a keto diet with the occasional deviation. I think it does help; raising my 'activity threshold before PEM results'.

I haven't measured things for a while. I should be more scientific about trying to work out if it helps. I have lost a bit of weight, which is welcome.

When you deviate how do symptoms change?

Did you go through any long enough period where you were really strict, measured glucose and ketones, and could evaluate any symptom changes?

 

[Hutan]

When you deviate how do symptoms change?

All of the following is what I have observed, but I haven't recorded things daily to be sure.

Minor gut symptoms.

Muscle heaviness and weakness: I have two steps off the back deck into the garden that I tend to go up and down many times in a day. When I'm relatively well, I don't even notice them. When I have eaten carbs, I have to consciously think to apply enough energy to get up the steps, I execute the step much slower. Also, I find the return journey from walking the dog hard work, or I find reasons not to take the dog for a walk at all and just throw a ball from the deck.

Pulse and orthostatic intolerance: resting pulse rate increases; more difficulties remaining upright e.g. doing the dishes, preparing food at the bench, making it around the supermarket without feeling 'out of it'.

Pain and PEM: more likely to feel steam-roller crushing pain; more likely to have a migraine, feelings of temperature dis-regulation and chills, vision blurring and difficulties thinking. I retire to the couch earlier in the evening or even have to take to bed in the early afternoon and sometimes fall asleep.

Did you go through any long enough period where you were really strict, measured glucose and ketones, and could evaluate any symptom changes?

No, probably not. Maybe when I've finished getting my son through his final high school year I will be able to evaluate things in a methodical way.

I'm not sure, does carb eating result in increased symptoms; or do increased symptoms result in cravings for carbs/easy food like toast and lowered willpower which result in carb eating? Also, how much of this is an hormonal influence at work? e.g. pre-menstruation, both a migraine and a desire for carbs/chocolate are more likely.

How are you going @leokitten?

 

[Trish]

I'm not sure, does carb eating result in increased symptoms; or do increased symptoms result in cravings for carbs/easy food like toast and lowered willpower which result in carb eating? Also, how much of this is an hormonal influence at work? e.g. pre-menstruation, both a migraine and a desire for carbs/chocolate are more likely.

Not keto diet related, but my daughter and I who both have ME and migraines and are not on a keto diet have figured out independently of each other that the day before we get a migraine we have craving to eat, often high carb, but basically anything. We've concluded the craving is part of the migraine onset, not the eating causing the migraine. Also we both found going gluten free reduced significantly the frequency and intensity of our migraines, and for me reduced gut symptoms too.

Sorry to take the thread off topic. Neither of us has managed to get started with keto yet. I still want to, but can't get myself organised enough. Just coping with life as it is now is difficult enough at the moment.

 

[andypants]

A ME-friendly, ketogenic, breakfast tip:

I prep ziplock bags with minced mushrooms and frozen spinach cubes and keep in the freezer. Twice a week I take 3 out, then mix up six eggs and distribute equally between the three bags.

I press out as much air as possible, close them and put them in boiling water for 12-15 minutes (or more, if you have more eggs or garnish). Three perfect omelettes, one for today and two already wrapped to go in the fridge for the next couple of days. Almost zero washing up.

Of course you can just prep three at a time and skip the freezer, or make just one. And of course any kind of omelett you prefer, although this is the only one I can guarantee is keto (and dairy free).

 

[Ron]

Keto Article from USCF: https://www.ucsf.edu/news/2018/08/4...-scientists-research-what-we-do-and-dont-know

"Swanson, a professor of neurology who has researched the impacts of ketogenic diets on inflammation in the brain, got curious about the ketogenic diet when trying to treat the inflammation that persists for days after a person suffers a stroke. When he tried inducing a ketogenic state in mice with stroke injuries, he said, “I was overwhelmed by the effect.” Blocking glucose metabolism worked to suppress inflammatory genes, which in turn helped stroke healing."

“It’s incredibly powerful,” said Weiss of the keto diet. “Cutting back on carbohydrates, there are so many metabolic benefits. The body processes the remaining carbohydrates more efficiently, and so it requires much less insulin.”

 

[adambeyoncelowe]

A ME-friendly, ketogenic, breakfast tip:

I prep ziplock bags with minced mushrooms and frozen spinach cubes and keep in the freezer. Twice a week I take 3 out, then mix up six eggs and distribute equally between the three bags.

I press out as much air as possible, close them and put them in boiling water for 12-15 minutes (or more, if you have more eggs or garnish). Three perfect omelettes, one for today and two already wrapped to go in the fridge for the next couple of days. Almost zero washing up.

Of course you can just prep three at a time and skip the freezer, or make just one. And of course any kind of omelett you prefer, although this is the only one I can guarantee is keto (and dairy free).

There's a gorgeous two-ingredient pancake recipe that I use for breakfasts. The trick is to use a small pan so they're easier to get right, and to make them when you're able, because they freeze if you put grease-proof paper between them.

See here: https://barefeetinthekitchen.com/delicate-cream-cheese-pancakes/

They're quite rich, so you can't have too many, and they contain dairy (but I use Arla Lactofree). Just one ounce of cream cheese per egg, blended and cooked in a hot pan. I use butter but coconut oil would work too.

 

[andypants]

Ooo, @adambeyoncelowe that sounds delicious! I can’t do too much dairy but will occasionally indulge in a fat head pizza. This sounds like the perfect Sunday morning treat.

It reminds me of another easy go-to:

1 egg + 1 tablespoon (15 ml) of coconut flour (in a soufflé pan or small bowl) for 1 minute in the microwave = instant fluffy bread roll!

 

[adambeyoncelowe]

Ooo, @adambeyoncelowe that sounds delicious! I can’t do too much dairy but will occasionally indulge in a fat head pizza. This sounds like the perfect Sunday morning treat.

It reminds me of another easy go-to:

1 egg + 1 tablespoon (15 ml) of coconut flour (in a soufflé pan or small bowl) for 1 minute in the microwave = instant fluffy bread roll!

Yes, I do those too!

 

[leokitten]

For me the diet has continued to cause a significant reduction in many of my ME symptoms and, like others have stated in their follow-ups, increases my energy and activity envelope before PEM or a crash. It doesn’t prevent PEM or crashes when I try to stay at the activity level required to work and live anywhere close to a fairly normal life.

The diet increases the envelope ceiling and the number of days I can go before PEM or a crash. No matter what anti-crash supplements or other things I’ve tried can I prevent them given the activity levels I am at before, only by reducing activity levels significantly can crashes be prevented. Levels that would not allow maintaining a job etc.

The diet has also not brought me back to pre-ME activity levels, not close at all really. But for the week or more between each PEM/crash event, depending on my workload, stress, and physical exertion levels, I can be somewhat active and live a limited regular life. It would be considered a high activity level for ME standards with some work and life tasks but I definitely cannot exercise, work much, or do things that waste energy. You can see it’s not close at all to pre-ME activity but it’s a huge improvement over 100% moderate homebound severity. But it also shows what a nightmare ME is, so horrible and debilitating, because even just having PEM and crashes every couple weeks or so make living a normal life impossible.

Before crashes I get my standard build-up of symptoms, including my body and brain strongly pushing me to want to eat carbs. It’s like my body is screaming to me in a visceral and painful way, “I’ve run out of energy, it hurts like hell, please I need energy now!!!!!”. If I eat enough carbs it extends my crash time significantly.

In addition, for me the diet must be followed fairly strictly, otherwise i start getting worse pretty fast. The blood measurements I’ve taken have shown a fairly strong correlation between my GKI and symptom levels.

It’s clear to me that the diet is the definite cause of the symptom improvements, it’s not coming from from something else or regular ME disease fluctuations.

It’s an easy experiment to prove this, when I stop the diet and follow a healthy regular diet within one day symptoms start increasing, within 2-3 days I’m completely crashed, with strong chronic symptoms, and back to moderate severity level where I’m homebound. When I restart the ketogenic diet symptoms start to improve within a couple days and I come back to where I was at a GKI < 3.

I can cause the above significant symptom changes over and over again by changing the diet, so it’s fairly clear that the diet is causing this.

 

[Trish]

ThatsT really interesting. Thanks for the update. I wish someone would run a clinical trial of keto.

 

[leokitten]

ThatsT really interesting. Thanks for the update. I wish someone would run a clinical trial of keto.

Sorry made some updates to post while you commented

 

[leokitten]

@Hutan may i ask, and I definitely don’t mean to interrogate in any way, but why did you state that you only think the keto diet helps?

Given what you’ve written to me it’s unequivocal that it helps you. Maybe I’m misunderstanding. Also it’s straightforward to prove that it helps or not by simply cycling between it and a regular diet and seeing changes in symptoms.

 

[Hutan]

but why did you state that you only think the keto diet helps?

Well,
1. I'm a sceptical person, especially about treatments for ME and about diets.
2. I haven't tracked things well enough. I think I feel better and I think my activity level increases when I'm in ketosis, but I'm not sure. And I'm aware it's easy to fool oneself. The activity I have to do varies quite a bit, so that complicates things. Also, I prepare food for people who aren't on the diet, it's too easy to eat a bit of carbohydrate.
3. I'm not sure about cause and effect. As you do, when crashing, I think I want food. And so that's when I'm most likely to eat carbohydrates, especially as a lot of carbohydrates are easy and quick to prepare. So, do I have PEM and then eat carbs? Or do I eat carbs and then get PEM?

The fact that I've stuck with it, even after periods back on carbohydrates, tells me that the diet is probably helpful.

@Ron, that article was interesting

Keto Article

as well as another article that your linked article mentioned that talks about how the keto diet seems to reduce brain inflammation.
https://www.ucsf.edu/news/2017/09/408366/how-ketogenic-diets-curb-inflammation-brain

The only thing that I'm confident improves my symptoms (and I'm quite sure of this as I trialled it over 3 months or so with full on symptom tracking) is ibuprofen. Presumably it works also by reducing inflammation. It's not something I want to take all the time though.

Thanks for the recipes - I'm going to try them.

 

[andypants]

The only thing that I'm confident improves my symptoms (and I'm quite sure of this as I trialled it over 3 months or so with full on symptom tracking) is ibuprofen. Presumably it works also by reducing inflammation. It's not something I want to take all the time though.

Same here.

And LDN, for the same reason I think. I let keto slide after starting LDN, probably because I could get away with more cheating with the meds inhibiting a full response. Hopefully keto + LDN will be even more effective.

 

[leokitten]

@Hutan the answer to the question, “do I have PEM and then get the urge to eat carbs or do I eat carbs and get PEM” is both. They also aren’t independent. I’ve found that during PEM and before crashes my body cries for more energy and wants carbs like something is wrong. If I eat carbs then it will worsen and lengthen PEM and crashes. I actually will not come out of a crash completely until I go back to a ketogenic diet 100%. If I stay eating a healthy, regular diet I will continue to be homebound moderate severity and never really come out of it.

But one can still easily test this, one can do an experiment when you are following the keto diet well and are at a time when you are feeling your best with minimal PEM and no urge to eat carbs. Also remove as many other confounding factors like don’t increase activity at same time etc. Then just start eating carbs even though you have no urges and no PEM. Follow what happens to your symptoms.

 

[leokitten]

Keto Article from USCF: https://www.ucsf.edu/news/2018/08/4...-scientists-research-what-we-do-and-dont-know

"Swanson, a professor of neurology who has researched the impacts of ketogenic diets on inflammation in the brain, got curious about the ketogenic diet when trying to treat the inflammation that persists for days after a person suffers a stroke. When he tried inducing a ketogenic state in mice with stroke injuries, he said, “I was overwhelmed by the effect.” Blocking glucose metabolism worked to suppress inflammatory genes, which in turn helped stroke healing."

“It’s incredibly powerful,” said Weiss of the keto diet. “Cutting back on carbohydrates, there are so many metabolic benefits. The body processes the remaining carbohydrates more efficiently, and so it requires much less insulin.”

I’m less inclined to believe neuroflammation reduction is one of the principal reasons a ketogenic diet significantly helps a subgroup of PWME versus the metabolic/circumventing aerobic glycolysis block/ketosis theory.

First because I think we would see a much bigger subgroup of PWME (or all PWME) benefiting from the diet if neuroinflammation reduction was the driving factor no?

 

[Kafka]

@leokitten

I think it is combination of both the reduction of inflammation (neuro and body) and the metabolic/circumventing part of ketosis.
For me, I need both to stay in remission - any inflammatory event takes me out - and coming off keto temporarily also takes me out.

of course I also need the MAF - my point is that in my own experience, it is the combination that works