Ketogenic diet

[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 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.

 

[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.

I 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, 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 this 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...

 

[Mij]

It could also be the 'five year stage' of M.E contributing to your improvement. I experienced this without any treatments, special diets etc.

Dr. Bell says "Some patients will recover completely, usually between three and five years from the onset" here

 

[leokitten]

It could also be the 'five year stage' of M.E contributing to your improvement. I experienced this without any treatments, special diets etc.

Dr. Bell says "Some patients will recover completely, usually between three and five years from the onset" here

It would be way too much of a coincidence that so many ME symptoms were going to disappear completely or improve significantly anyway, right at the same time that I was going into ketosis.

At least for my ME disease pathology (and quite a few others), the changes that occurred not right at the beginning but gradually throughout the first week of fasting and ketogenic diet that these symptoms were 100% due to impaired glucose cellular respiration. It's hard to convey in a forum how serious and striking the changes were when nothing ever, I'm mean ever, made a dent before.

Even leading up to, during, and now after a crash these symptoms did not come back. Unfortunately the worst ME symptom of all, overexertion fatigue and eventual crashing, was only reduced but not prevented. But the jury is still out on that, I haven't given up hope that I just tried too much too soon.

 

[Mij]

It would be way too much of a coincidence that so many ME symptoms were going to disappear completely or improve significantly anyway, right at the same time that I was going into ketosis.

My huge improvement with M.E was almost overnight when I was in my 5-6 1/2 year window, I seriously thought it was from all the veggie juicing I did back then. I started jogging again as though I was never ill in my life, no deconditioning whatsoever. This was when PEM started, I never experienced it before that time.

I'm not saying it's a coincidence in your case, just that it might be a factor. Who knows really? Just be careful.

 

[TiredSam]

I'm really pleased you've found some improvement and I hope it persists. But I have to ask

As many of you know from my posts over the years, I've tried literally most everything. NOTHING ever worked. Thanks to all of you for posting all the different and interesting things to try, trust me it was worth it to try and have some hope of improving. Probably in my third year I really stopped posting much and stopped trying new things. I just said to myself nothing is working so all I can do is dig in, stick with the few medications which I think might help and just try to manage every day and keeping tabs on latest research.

If you had had any spontaneous improvement in the first three years, or since then whilst trying something, wouldn't you also be saying

It would be way too much of a coincidence that so many ME symptoms were going to disappear completely or improve significantly anyway, right at the same time that I was ...

And insert whatever you were trying at the time at the end of that sentence?

 

[Keela Too]

I'm really pleased you've found some improvement and I hope it persists. But I have to ask . . .
If you had had any spontaneous improvement in the first three years, or since then whilst trying something, wouldn't you also be saying . . .
And insert whatever you were trying at the time at the end of that sentence?

Of course this is a dilemma with everything you try whilst suffering from a long term fluctuating condition, and it is the very reason we need randomised, placebo controlled, blinded, trials.

I had a bit of fun writing a short blog on this idea a while back. (Having said that I don’t think @leokitten was being evangelical in the way my opening lines to the post describe. ) http://sallyjustme.blogspot.com/2015/04/cargo-cult-cures.html

Mind you, it would be interesting to compare the currently recommended healthy diet to a keto diet, in a randomised trial, where the outcome assessors were blinded to diet type.

Or better still to carry out a factorial analysis where each of the keto/non-keto diets also had sub-groups that used highly processed foods, or non-processed foods. (Cos I do wonder if some of the keto benefit is linked to clean-eating. I certainly find there are fewer options for eating junk food now I’m eating very low carb.)

Having said all that, it is easy to try keto yourself, with no obligation to continue if after a few weeks you find no benefit. I used the free month trial on DietDoctor.com to help me transition.

I’m still eating that way. It suits me fine. I no longer miss all that carby stuff, and I think I’m functioning a bit better. I also stopped my weight gain trajectory, lost a few lbs, and stabilised just above my ideal BMI, all without feeling hungry at all!

I know all of us need to be careful with what we expend our energies, hopes & dreams on, so in no way would I push keto on others. But I also think it’s right to talk about things we think help us. I suspect most research starts with an anecdote of some sort.

 

[Keela Too]

Hi everyone - sigh... well I just started recovering around midday today from a crash

I have found my tolerance to doing stuff has changed. I think I am now less susceptible to having a crash after a single higher energy event than I was before - meaning I can take a few more in-the-moment risks than previously.

However, I cannot that sustain effort over a series of days.

A wee analogy that I find helps:

Think of a large barrel that collects toxins (or what ever it is that accumulates to cause a crash).

Resting up before an event helps to lower the toxin level in that barrel. So you have a greater space to fill before overflow happens (overflow being the crash).

When all is balanced your bodily processes can empty the barrel at the same rate it fills.

Ideally you don’t operate with the level always near the top of the barrel, but rather you attempt to operate with the barrel level low. This gives you the flexibility to do something occasionally without a planned rest first. I can now do this. When I was at my most ill, the barrel was brimming most of the time, and resting up didn’t empty it enough for me to do much at all.

So here’s the thing, once a bit of recovery happens, you have a bigger barrel, and more space to fill between the baseline operating level, and that overflow/crash thing.

This means that doing “just a little bit extra” every day, will not actually get noticed as being a problem, until some time has passed. It’s like the barrel is filling just slightly faster than it is emptying, so the level inside is rising very slowly..... until it fills.... Ooops!

It’s easy to get fooled into thinking that the things you were doing for a series of days without apparent effect, were sustainable. However they might just be slowly raising the level in your barrel. That is not improvement.

Hope that thought helps explain why there may not be an obvious trigger to a crash. It may not be what you did yesterday, or the day before, but rather the accumulation of small effects over a longer period.

 

[Trish]

Interesting analogy, @Keela Too.

I find the flat battery one helpful.
I have a battery that
- can only take up to 10% charge (my energy envelope)
- flattens more rapidly than a normal battery when used for activity, and
- is much slower to recharge than a normal battery.

If I rest for several days before I have to do a bit more, there's more chance of getting a bit more charge into my faulty battery, but only up to its low ceiling.

If I do a bit too much each day for several days in a row, the battery gradually gets flatter and flatter and there isn't time for it to recharge between uses. Or if I do a lot in one day, I can flatten it in one go.

In either of these circumstances - a bit too much over several days, or a lot too much on one day - I end up with a very flat battery, ie PEM or a crash, and it can take several days or more to get the battery back up to its usual low level.

 

[Keela Too]

Interesting analogy, @Keela Too.

I find the flat battery one helpful

I liked it for a while - but lately I feel it too readily feeds into the “tired” notion, of a crash just being tiredness. People often say a crash feels like being poisoned - so I now prefer the barrel of toxins analogy - along with their spilling out representing that horrid cascade of multiple symptoms that goes way beyond simply being drained of energy reserves.

 

[Keela Too]

Mind you @Trish the two analogies could perhaps work well together? It could be that as our batteries run down, so we have less energy to efficiently empty the toxin barrel, meaning it fills even faster. Hence the moment of a crash becomes even harder to predict.

 

[Mij]

All my noticeable improvements/almost remissions over the first 12 years of illness have been spontaneous. But after that mark I have experienced less and less improvements. I'm not worsening but it has stayed pretty much the same as long as I pace myself.

 

[leokitten]

I liked it for a while - but lately I feel it too readily feeds into the “tired” notion, of a crash just being tiredness. People often say a crash feels like being poisoned - so I now prefer the barrel of toxins analogy - along with their spilling out representing that horrid cascade of multiple symptoms that goes way beyond simply being drained of energy reserves.

++ on the poisoned feeling. When I came down with ME and my family members were asking how it felt that is one of the exact words I used... it feels like my body is being poisoned and is painfully screaming at me to stop because it cannot take anymore.

 

[leokitten]

I'm really pleased you've found some improvement and I hope it persists. But I have to ask

If you had had any spontaneous improvement in the first three years, or since then whilst trying something, wouldn't you also be saying

And insert whatever you were trying at the time at the end of that sentence?

That is a very good point, though the first 3 years I was throwing the kitchen sink at the illness doing multiple protocols pretty much at the same time.

There are a number of posts or threads on PR where we had the discussion on whether it’s better to try one thing at a time to see what works or to do as much in parallel/synergy as your body supports.

I was telling people back then that I didn’t notice anything working and, if anything was working, it was taking a very long time. For that reason I didn’t want to do one thing at a time because it would’ve taken forever and I wanted to not be forced to stop my career.

 

[Judee]

I eat a lot of egg, avocado, coconut & olive oil, coconut yoghurt, macadamia nuts & almonds.

EDIT: and peanut butter!

Allergic to most of those: egg, coconut, macadamia, peanuts are all no-nos for me and olive is suspect. Plus, I can't do cow's milk dairy but have found sheep yogurt and goat milk cheese are okay if I don't overdo.

 

[leokitten]

Hi everyone

I've come out of my crash since Thursday or so. Since I get this intense (literally uncontrollable) carb-craving hunger during the early part of a crash I ate carbs and fell out of ketosis during the crash. In the later part of my crashes it always goes away, so since Wednesday I slowly restarted fast and then ketogenic diet. As of today I'm in moderate ketosis with a GKI of 4.5.

I want to report that now I have another data point that strongly suggests that glucose cellular metabolic impairment is the likely downstream cause of many of my ME symptoms. When falling out of ketosis this week those symptoms started to come back by the end of the crash. And again, now coming back into ketosis, they are already going away again. I do not believe this can be spontaneous, and yes I am self-reporting, but as you all know ME symptoms are really strong and always there (with some fluctuations). To see them just completely go away again or to become minimal is something very intriguing.

Going to try very hard this time to not elicit another crash and now know to look out for any increasing fatigue/tiredness as a warning sign. I'm also going to try some PEM reliever treatments which I've actually never done before (thanks to @Hip for the compendium thread) if I feel like another crash is coming.

 

[Judee]

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.

I'm following your post though and still trying to figure out a way I could do this.

I've had to eliminate so many foods over the years because of allergies.

The problem is I develop new allergies if I eat a food too often. I've listed some of my allergy foods in my post above but I have a whole slue of thiol/sulfur foods I can't eat either because I get migraines when I do and a whole list of suspect foods that I get some symptoms from so only eat once in a while like fish.

Any suggestions? I'm like you and prefer a dietary approach rather than using medications.

 

[alicec]

Just to warn people, if your glucose management/insulin sensitivity if faulty for whatever reason, you may have trouble achieving ketosis initially and may see paradoxical blood glucose rises.

As I noted in an earlier post, I have been eating lowish carb for years and for the past few months, very low carb. I had been considering going even lower (ie ketogenic) and this thread inspired me to start and to consistently start monitoring blood glucose and ketones (bought a Freestyle Optium Neo).

I was amazed to find on several occasions that blood glucose was 6.3 mmol/l (113 mg/dl) after an 18 h fast and I was barely into nutritional ketosis (BHB 0.6 mmol/l) or not at all (0.4 mmol/l). For those of you not familiar with blood glucose levels, a good fasting BG would be 3.9- 5 mmol/l; 5.1-5.4 is borderline, 5.5-6.9 is prediabetes, 7 and above diabetes.

Monitoring of post-prandial rises was inconsistent - sometimes virtually no rise (good), sometimes a rise of more than 1 mmol/l (bad) after an identical meal.

I mentioned in my earlier post that I had begun to suspect faulty glucose management because of increasing FBG and triglycerides and had become more vigilant about reducing carbohydrate intake (and meaning to begin monitoring much earlier - but everything is such an effort so of course nothing done), but this was something of a surprise and a bit of a wake up call.

I've been doing some reading and see that a slightly elevated BG on a ketogenic diet is actually to be expected and not a bad thing - see here, here, here, here and here for discussion of different aspects of the question.

In my own case it seems clear to me that there is more than just the dawn phenomenon going on and I need to take more drastic action to clear out liver glycogen stores and increase insulin sensitivity. I had been doing intermittent fasting 2/7 days but now I intend to do 18 h fasts every day - ie skip dinner, and keep to less than 20 g carbs/day. I'm not even going to both monitoring for a month or so, then I hope I may get better and more consistent results.

 

[leokitten]

Just to warn people, if your glucose management/insulin sensitivity if faulty for whatever reason, you may have trouble achieving ketosis initially and may see paradoxical blood glucose rises.

@alicec very interesting you mentioned that. There were a few people either here or on PR that replied to this thread saying they tried keto and stopped because their glucose levels kept going up.

 

[Trish]

Please can members be aware of this rule when posting on this thread. It is fine to share your experiences, but please be careful not to either ask for or give medical advice.

Rule 5: No medical advice
Members may offer or request opinions and personal experience regarding seeking a diagnosis and treatment, but they may not diagnose or recommend treatments to each other, nor request such diagnoses or recommendations. Treatment recommendations are also inappropriate if contained in a protocol which purports to be broadly applicable based upon a diagnosis or other characteristic, or includes a process for determining which people should try specific aspects of the protocol.