First time in remission with ketogenic diet

Judee

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Whenever I try water fasting (going without food, drinking only water) for a few days, I become extremely ill - I can't breathe.
I wonder if it's because your electrolytes get too low. I was on a modified fast where I became hyponatremic and ended up in the ER.

So many of us are on low-allergy diets, i.e. eating very plain foods, as it is. I think that already makes our sodium intake low. For me the fast made it worse because even my "salty" foods were eliminated.

Then for some reason, my body reacted by having me crave water instead of salt. That's when everything started going downhill fast.
 

DoggerFisher

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I am enjoying this thread because I too got benefit from going keto the main one being to my eyes which improved in 3 days so I could read / spend time on computer. BUT had to get electrolytes right. initially was insomnia with racing heart. read bodybuilder forums to make own electrolyte mix. also as emphatically stated in thread you need to count and measure. tedious. but carbs lurk everywhere. I also noticed teeth and gums were much better. baffled the dentist. he hasn't been measuring his lurking carbs. however not a panacea as I'm quite bad again now but I can put that down to a month of highly irresponsible overenthusiasm....or in the ME world just enthusiasm maybe.... have just got a low carb book to try and understand more and think of new things to eat. it does get tiresome consuming units but it does also make that stuff easier
 

cigana

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I wonder if it's because your electrolytes get too low. I was on a modified fast where I became hyponatremic and ended up in the ER.

So many of us are on low-allergy diets, i.e. eating very plain foods, as it is. I think that already makes our sodium intake low. For me the fast made it worse because even my "salty" foods were eliminated.

Then for some reason, my body reacted by having me crave water instead of salt. That's when everything started going downhill fast.
I don't think it was that because according to a doctor who runs a fasting clinic for many years, they used to test patients' electrolytes regularly but gave up because they were always fine (even on long 2-3 week fasts). So I think the human body is perfectly capable normally of fasting.
 

cigana

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The only thing is that ME/CFS makes our body behave in ways that are not normal anymore for instance many of us suffer from dysautonomia so cannot properly balance our electrolytes. Was your doctor working with ME/CFS patients?
No I don't think he has any experience with MECFS patients who are clearly reacting differently to normal. I suppose it could be electrolytes, but in my case it coincided more with going into ketosis. I did wonder if toxins stored in fat were being released too quickly in ketosis.
 
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@Silencio are you measure blood ketones, glucose, and calc your GKI? You should definitely already be in ketosis if you are doing the diet right. As @Ema said if you are just doing low-carb people generally don't get into ketosis, but by fasting initially and then doing a true ketogenic diet with no cheating you should've seen good GKIs by now.
Well, no, the entire idea and reason for the Atkins diet was to entire into Ketosis in a couple of days or so. I am not sure exactly how the Keto diet is different but I have simply eaten an almost no card to very low carb diet before primarily for weight loss but I discovered some amazing benefits from this very low carb diet.

I have had extreme GERD and borderline Barrett's Esophagus for years with extremely rapid gastric motility, dumping, causing me to vomit up all my undigested food within a few minutes or longer but the heartburn was absolute acid and I take Prilosec for it. On a low carb diet, my heartburn completely goes away, no Prilosec, and as long as I don't overfill my stomach, the vomiting disappears too. I have done this two or three times over the years with the same result but I do not eat a high fat diet but more lean meats, fish, chicken, bacon, eggs, cheese, etc.. Then after a couple of weeks you can start to introduce more vegetables, nuts and whatever else that is allowed.

I am interested in doing some research and reading on the Keto diet to check it out but I have been bedridden and severely sick now into my 20th year and when this stupid disease is at its worst, there is nothing that can touch it or is as strong as it is, in my experience. I have tried literally everything over the past 20 years and nothing at all relieved my daily misery and suffering from numerous symptoms of all sorts but more neurological symptoms than anything else. Sometimes, sick people just stay sick. And there’s no diet, meditation, medication, positive outlook, exercise or smoothie that can fix it.

But, this is just my experience and I realize that although we all share very many of the same symptoms, we also have many differences too.
 
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leokitten

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@leokitten
Which supplements are you still taking with the keto diet? OR Have you stopped all the supplements on the keto diet?
And thank you very much for sharing your experience and so many tips about keto diet.
I don’t take anything really. I stopped supplements except for vitamin D and a multi a couple years or more ago. For the first 2-3 years of ME did so many trials of so many supplements etc and nothing worked at all. For me a waste of money.
 

leokitten

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Want to give a follow-up that I posted before on s4me

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 1 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 things that waste energy. I also start getting symptom worsening after a few days. You can see it’s not close to pre-ME activity but it’s a huge improvement over 100% moderate homebound and bedbound 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 very 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 and bedbound. 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.
 
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leokitten

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Another related more recent follow-up from s4me relating to caregiving and ME’s impact on ability to work.

One question this has brought up, and I’ve been wondering recently, is how do we get people to understand the impact of ME on our ability to work. How does one convey that’s message?

Take this forum for example, that PWME can be on the computer every day and contribute to this site, which takes significant energy and cognitive effort depending online activity and thread subject matter. That’s just one example where ME-naive people will ask, “why can’t you use that time and effort doing a part-time job even from home?”

Also reading the OP caregivers thread its the same story that’s happened in most of our lives, including mine. After six years of gradual decline I’m now at (way past) the point where I am forced to quit my job because ME has gradually taken more and more of it and I have nothing left to cut out except my career.

Already forced to give up on everything else that was part of me and my life before ME. No more sports, no more physical activity, no more social life, no more hobbies, all of these ME took during the first two years and I fought it the entire way by just pushing to live my old life until I physically couldn’t do anything nonessential.

I have to say unless you are a PWME, a caregiver, family member or friend of a PWME (that visits often enough to see what it’s truly like) you just will not be able to understand the strange debilitating symptoms of this disease until it happens to you.

You are simply not in control of your body anymore, the disease completely takes over your body, including your brain function, and subjects you to a constant, and I mean literally constant, array of physiological and neurological symptoms that are simply exhausting on their own to manage if it weren’t for that multiple symptoms cause cause debilitating fatigue on their own.

They don’t understand why they can see you one day being active and “normal” looking and then tell them you have the horribly debilitating illness that causes you to constantly crash and be mostly bedbound.

The only part left of my old life and old me that I had left, and I fought so hard to keep for six years, is my career that is now finally coming to an end. I crash constantly, every 1-2 weeks depending on activity level, and crashes typically last 3 or 4 days before I recover enough to be able to function again. How can someone even manage any semblance of a normal life like this?

My last ditch effort to stem the worsening was to do a strict ketogenic diet which sadly was the only treatment I’ve tried in six years that gave any significant improvement. But the diet doesn’t work well enough, for me at least, to maintain the exertion levels required by work and not crash on a continual basis.

I’ve long said to myself, my life feels like the main character in the movie Memento, though every 1-2 weeks I crash and have to completely start my life over and pick up the pieces.

Sorry in advance to moderators if I’ve gone a bit off-topic.
 

leokitten

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And another follow-up on that thread

Over these years on here and PR reading similar stories of lives being slowly destroyed, thinking foolishly that it might not happen to me and I should keep going. I know I haven't been much of a contributor on PR, it's only because of being completely overwhelmed with trying to maintain my career and job.

The thing is most PwME look completely normal when we are well enough to, in my case, be able to work or be outside and interacting with people. It's like you couldn't have invented a more horrible disease. Even when most PwME are having symptom worsening you still look normal.

You know earlier in my illness, when I went to ME-related events where I met other people, I even had to initially check myself in my head when I saw many other PwME. My conscience by default would tell me "they look totally normal and can do a lot of exertion" when I interacted with people who told me they could not work at all, yet they were active and talkative at the event and had either flown a plane or traveled a long way to get to there.

Can you imagine how hard it was for a person having ME (in their earlier more naive stage ;)) to fight my own initial judgments when I saw many other PwME. And I'm sure back then people had similar thoughts when they saw me. So for healthy people it's even 10x worse when they see us. They just think you are taking advantage and lazy.

I also feel in the six years that I've had ME I've had a particularly tricky type or stage of ME (not sure the right adjective) which tricks me into pushing and crashing and that there would be some hope that I could continue that way. I've wanted to ask other people about it.

Normally when I come out of a crash, the crash causes some kind of big reset where I actually feel decent when it finishes. It's likely due to all the resting, stimulation shut off, and sleeping the crash forces on me. I suddenly want to shower and do self-care, work and do work-related activities, go outside and do errands, walk around, I have much more energy, and whatever part or pathways in the brain that makes you want to get things done and have interest in things switches back on like a light. Healthy people take all of that for granted (I sure did).

At the end of a crash, I typically feel a glimpse of what I used to be when I was healthy. It's very seductive. So I always start over living life again trying to catch up with work, errands, house stuff. Depending on the amount of physical/mental/emotional activity, this level would last for 2-3 days or more.

Then symptoms start worsening and creeping in again and I need to push harder to maintain that level (which I do) for another few days until then the pre-crash characteristic symptoms I get followed by a crash which can last as short as 1-2 days but more normally 3-4 days or even a week. And then the whole cycle starts over (like Memento :wtf:)

My crashes are usually really bad and have always been. I don't know if others have the same symptoms but for me crashes appear very similar to a type-1 diabetes hypoglycemic attack. I have physiological symptoms like poor coordination, vision, balance. Light, noise and any stimulation becomes so painful and excruciating because they make my brain feel that intense pain like every neuron is on fire, my ears constantly ring, and my eye sockets hurt so bad and to move them like I have an intense hangover.

My personality completely changes. I become really agitated, anxious, I am not aware of what's going on and what people are telling me, I think the wrong things, I want to be left completely alone in a dark bedroom with white noise. I have to shut off and if I'm not allowed to for whatever reason as time goes on I become more agitated because the pain physically excruciating.

What's the worst is that I cannot sleep because my brain is so on fire, so I have to take different medications to completely knock me the hell out. When I am coming out of the crash, my personality completely returns to normal. During a crash I can do nothing but human basics, going to the bathroom, finding something to eat which takes no work, sleeping, resting, and TV in the later stages of the crash.

It's insane because my type, or stage, of ME is one that has such wild changes in severity, from pretty mild high activity to 100% bedbound severe. That's why I'm not the biggest fan of the ME severity level categories, they dont effectively capture the symptomology of many PwME.

As the disease has gradually worsened crashes slowly started to happen more easily and it took me longer to recover, gradually I started spending fewer days in the better active states and more days in a crash or PEM state.

The keto diet helped improve much of that but it's not enough. It also has to be followed very strictly I have to have a low GKI for it to work well and that can be quite difficult sometimes, especially because my brain signals an intense, uncontrollable craving for carbohydrates at the beginning and early stages of a crash. In fact, one symptom that I am starting to come out of a crash is that carb hunger goes away and I return to baseline.

Most other stories I've read of PwME their crashes aren't like this at all. They can last much longer and I've never heard someone saying the get this big reset at the end of a crash. But maybe there are others!
 

sb4

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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 very 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.
The keto diet helped improve much of that but it's not enough. It also has to be followed very strictly I have to have a low GKI for it to work well and that can be quite difficult sometimes, especially because my brain signals an intense, uncontrollable craving for carbohydrates at the beginning and early stages of a crash. In fact, one symptom that I am starting to come out of a crash is that carb hunger goes away and I return to baseline.
As you know, I have tried keto and high fat many times and notice an improvement in my POTS/heart pounding (by far my worst symptom) yet my gastroparesis gets much worse on this diet. On the other hand my glucose tolerance is very poor and my symptoms worsen proportionatly with how many carbs I have eaten.

Well I strongly recommend you check out my thread I started a week ago. Baring in mind I have been trying a ton of things in the last 2yrs to improve my glucose tolerance, what I have found that works is using MCT oil with carbs. Basically MCT provides so many AcetylCoa that most of your glucose goes away from PDH and down into oxaloacetate. At least I think that is why it works.

I have also had success applying it transdermally as MCT is know to cause GI issues. I apply 4tbsps all over my torso and face before a big carb meal and then have 1+tbsps of MCT with the meal. I am still working out the kinks but my carb tolerance has drastically improved on it.

Perhaps when you get those carb cravings before a crash, you might be able to scratch your bodies itch for glucose without messing with PDH. Or perhaps it could simply make the diet more tolerable for you.

Either way I would be very interested in hearing your results if you decide to try this.
 

leokitten

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On the other hand my glucose tolerance is very poor and my symptoms worsen proportionatly with how many carbs I have eaten.

Well I strongly recommend you check out my thread I started a week ago. Baring in mind I have been trying a ton of things in the last 2yrs to improve my glucose tolerance, what I have found that works is using MCT oil with carbs. Basically MCT provides so many AcetylCoa that most of your glucose goes away from PDH and down into oxaloacetate. At least I think that is why it works.

I have also had success applying it transdermally as MCT is know to cause GI issues. I apply 4tbsps all over my torso and face before a big carb meal and then have 1+tbsps of MCT with the meal. I am still working out the kinks but my carb tolerance has drastically improved on it.

Perhaps when you get those carb cravings before a crash, you might be able to scratch your bodies itch for glucose without messing with PDH. Or perhaps it could simply make the diet more tolerable for you.

Either way I would be very interested in hearing your results if you decide to try this.
I’m the same, I’m pretty intolerant to carbs for a long time now and it has nothing to do with following the keto diet. Ive been gradually declining for many years and never realized that maybe eating carbs was a major contributor until late this past summer.

MCT oil gives me constant diarrhea, but I would try it again if it means I could have carbs every once in a while without them causing fairly rapid symptom worsening.
 

DoggerFisher

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Thanks for sharing @leokitten so much of that chimes. Except as you say the reset but I've had it way longer 40 years but with periods of more normal life. Am still working by the skin of my teeth but it is as you describe and I think most of my colleagues think I'm antisocial and probably have a mental illness even though I am "out". My most successful interventions have been keto and, my favourite, getting a cleaner....
 

leokitten

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@leokitten What are you using to track bHB lavels and how much did you pay for it? WOuldn't mind seeing what my glucose and bHb levels are on my new diet.
I’m still using the KetoMojo ketone and glucose blood meter and strips.

I will give MCT oil try, my first attempt will be next time I feel a crash and intense carb hunger coming on. Or as you suggested taking a single meal break from keto to eat carbs + mct and see how it affects blood numbers.

I have a feeling I won’t be able to just eat carbs and use MCT more or less continuously because from my experience I’m pretty housebound now without getting the ketone levels to high moderate ketosis. I’ll have to check how much of a GKI effect MCT has and report back.
 

DoggerFisher

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Just a short post for @leokitten to say I had pasta last night it was bloody delicious (absence does make the heart grow fonder!) but along with it came inexplicable anxiety as it fired something up and this morning terrible aching joints and muscle pain. Yes, like a hangover, complete with remorse. This is what happens and was probably happening for years. I'm not in ketosis now but still low carb high fat almost zero sugar and generally so much more zen as a result. Rambling, but I guess the net benefit of it for me is neurological mostly.... Will shush now.
 

leokitten

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Just a short post for @leokitten to say I had pasta last night it was bloody delicious (absence does make the heart grow fonder!) but along with it came inexplicable anxiety as it fired something up and this morning terrible aching joints and muscle pain. Yes, like a hangover, complete with remorse. This is what happens and was probably happening for years. I'm not in ketosis now but still low carb high fat almost zero sugar and generally so much more zen as a result. Rambling, but I guess the net benefit of it for me is neurological mostly.... Will shush now.
@DoggerFisher no need to shush, we are here to relay our own experiences and “data points”. I’m exactly the same I cannot remember the last time I had pasta because all those carbs would make my symptoms shoot up. Pizza too, which i miss so so much