First time in remission with ketogenic diet

[Mary]

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.

Hope I'm not taking this thread off-topic here, but I'm wondering if you might have low stomach acid. Years ago food would feel like it just sat in my stomach for hours and eventually between my doctor and my chiropactor I learned I had low stomach acid. I also had a low tolerance for fats and animal protein, both difficult to digest with insufficient stomach acid. I've been taking betaine HCL with pepsin (the pepsin is important for digesting protein) for many years now and it's made a huge difference in my digestion, which is now quite good. Low stomach acid seems to be very common in ME/CFS.

I did a quick google search on gastroparesis and stomach acid and there are some hits.

I also had to do a liver detox several years ago - this was a separate issue, I think primarily triggered by heavy chemical exposure at a job I had. But I think low stomach acid exacerbated the problem.

A simple test you can do to check your stomach acid is to dissolve 1/4 or 1/2 teaspoon baking soda in 8 ounces of water and drink it on an empty stomach (empty stomach is very important). If you don't burp within a few minutes, I think 5 max, it can indicate low stomach acid.

 

[sb4]

Hope I'm not taking this thread off-topic here, but I'm wondering if you might have low stomach acid. Years ago food would feel like it just sat in my stomach for hours and eventually between my doctor and my chiropactor I learned I had low stomach acid. I also had a low tolerance for fats and animal protein, both difficult to digest with insufficient stomach acid. I've been taking betaine HCL with pepsin (the pepsin is important for digesting protein) for many years now and it's made a huge difference in my digestion, which is now quite good. Low stomach acid seems to be very common in ME/CFS.

I did a quick google search on gastroparesis and stomach acid and there are some hits.

I also had to do a liver detox several years ago - this was a separate issue, I think primarily triggered by heavy chemical exposure at a job I had. But I think low stomach acid exacerbated the problem.

A simple test you can do to check your stomach acid is to dissolve 1/4 or 1/2 teaspoon baking soda in 8 ounces of water and drink it on an empty stomach (empty stomach is very important). If you don't burp within a few minutes, I think 5 max, it can indicate low stomach acid.

Unfortunately I have suspected this before and have tried very high doses of betaine hcl with little effect. It's interesting to note that I can take very high doses with zero stomach burning. Apparently you are meant to increase caps to a max of 5 and stop when there is burning. I went up to 20 and nada. Not sure what to make of it.

 

[Mary]

I'm also going to try some PEM reliever treatments which I've actually never done before (thank you @Hip for the compendium thread) if I feel like another crash is coming.

I've had great results with branched chain amino acids cutting my PEM recovery time in half. The first time this happened I was stunned, I could feel the crash lifting when it shouldn't have. I've been taking BCAAs ever since (going on 4 years now). I take 8 of these a day on an empty stomach - 4 when I first get up and 4 late morning. They may help my energy a little as well. Other members have also reported good results with BCAAs.

 

[Mary]

@leokitten - thank you so much for this incredibly detailed and thorough thread about the keto diet. You've inspired me to give it a try. I don't think I would have otherwise. I appreciate so much all the information and links you have provided!

Now I have to get organized, get a meter and proper food, etc., but you've made it seem doable, which is no mean feat . And actually I look forward to eating simply and not cooking much! I've pushed myself to cook whenever possible as I avoid processed foods as much as I can. But I can handle eating some olives and avocados and whatever else is indicated

 

[Mary]

Unfortunately I have suspected this before and have tried very high doses of betaine hcl with little effect. It's interesting to note that I can take very high doses with zero stomach burning. Apparently you are meant to increase caps to a max of 5 and stop when there is burning. I went up to 20 and nada. Not sure what to make of it.

I'm sorry to hear that. Yes, that's how I was told to take betaine HCL and I reached the burn at 4 capsules. Interesting though - I wonder why you didn't feel any burning. I don't know what to make of it either --

 

[leokitten]

One thing I want to add to those interested in trying this diet in case I forgot elsewhere in this thread.

For me, a couple of major clues that many of my symptoms were possibly related to ME mitochondrial carbohydrate metabolism impairment were:

1. When I tried fasting on different occasions for a day or more I felt somewhat better and symptoms improved.
2. When I ate even healthy meals with a regular amount of carbs this would commonly cause fatigue, exacerbation of symptoms/PEM, or even full crashes if the meal was large and I was already overexerted. As my severity got worse it was easier for a standard meal to do this.

 

[anne_likes_red]

One thing I want to add to those interested in trying this diet in case I forgot elsewhere in this thread.

For me, a couple of major clues that many of my symptoms were possibly related to ME mitochondrial carbohydrate metabolism impairment were:

1. When I tried fasting on different occasions for a day or more I felt somewhat better and symptoms improved.
2. When I ate even healthy meals with a regular amount of carbs this would commonly cause fatigue, exacerbation of symptoms/PEM, or even full crashes if the meal was large and I was already overexerted. As my severity got worse it was easier for a standard meal to do this.

Feeling better when fasting was a good clue for me too. I could only really manage an extended overnight fast at first. Cognitive improvement was the most striking thing! I can't help feeling healthy people get this benefit overnight...assuming they're not snacking through the night of course lol.
I got into therapeutic ketosis this past April and by June I was able to fast 2 days effortlessly. Just by burning some body fat I guess. It might not work if you have too little stored.
I could never go straight from carbohydrate burning (as a primary fuel) into a 2 day fast, so I had to lower carbs and increase fats slowly until carbs were super low. I feel I have some kind of metabolic inflexibility or lack of resilience...possibly related to the cell danger response/dauer state if you subscribe to that theory. It just takes longer than it should to adapt to comfortably burning fat. I have no idea if this is a ME thing, or just a me thing. A few years back I would get shaky if I went more than 4 hours between meals. No diabetic markers or anything like that.

 

[bertiedog]

I could never go straight from carbohydrate burning (as a primary fuel) into a 2 day fast, so I had to lower carbs and increase fats slowly until carbs were super low. I feel I have some kind of metabolic inflexibility or lack of resilience...possibly related to the cell danger response/dauer state if you subscribe to that theory. It just takes longer than it should to adapt to comfortably burning fat. I have no idea if this is a ME thing, or just a me thing. A few years back I would get shaky if I went more than 4 hours between meals. No diabetic markers or anything like that

I am just like this and have been since the 80s but until 2001 I ate way too many carbs and also sugar. It has taken me so many years to go low carb and my energy has benefited from this without doubt and I lost 2 stone with the help of thyroid/adrenal meds.

However its only since April this year I have tried to go more towards ketosis but have found it EXTREMELY difficult and have had to go very slowly and stopping for several weeks whilst I treated a long standing throat infection that was making me feel very unwell.

Currently I am into my third week of the second attempt to get into ketosis and my blood sugars are very slowly improving but will also very quickly go off and start rising to around 6 or 6.3. This usually happens as the day goes on if I don't severely restrict my carbs at lunchtime and dinner.

For me the morning has always been the hardest to restrict carbs because I tend to get very weak and extremely dizzy but with a big increase in fat and added MCT oil it does seem to be helping but I have still needed a small snack 2 hours after breakfast and am still suffering with almost non stop headaches which I hope will soon stabilise.

I think the situation for me is difficult because I have to take 6 mg Prednisolone daily and it is known that steroids increase insulin resistance but I think it is still possele to get into ketosis whilst on them, it just makes it harder.

I woke with a bad head at 6 am and blood sugar was 4.7 but as I took my thyroid and adrenal meds I really felt I needed to eat which is usual for me having only had a tiny bit of cheese for 12 hours (apart from water, decaf tea and tiny bit of soya milk around 8.45 pm yesterday) so had some homemade yoghurt with added flax seeds, and psyllium husks for fibre. This helped me to feel a touch better and I did manage to go back to sleep.

I have been really amazed at how so many people with ME say they feel better from fasting, for me it's been unthinkable and I have needed to top up every 2 hours in the mornings for as long as I can remember. As I am now 70 that is a very long time and I believe my Mum set up the pattern for me to have a mid morning snack as I remember me taking a sandwich to school for break!

Finally I would add I don't really have any weight to loose apart from some fat which is slowly reducing off my stomach area which is good to see but really I don't want to loose any more weight which probably means I need to have at least 35 grams net carbs plus of course lots of fats and good protein and hope this will be ok to stay in ketosis. I did work out the macros and think that was the amount of carbs that came up.

This time I am determined to stick with it in the hope it will help to even out my energy and maybe even help me to regain control of my migraines but I do find it very difficult to stick with in the mornings.

Thanks so much to @leokitten for starting this thread as it really has spurned me on and also for the other members who post with their experience. I have also benefitted from reading other forums where people with various other conditions are trying a Keto diet.

Pam

 

[bertiedog]

Forgot to say that one reason I have struggled so much is that on most days I can walk my dog for around 25 minutes but even with a low carb diet my energy would run out as my blood sugar rapidly decreased from say 6.3 to say 5.2. I would be left weak and dizzy and need to "top-up" with some peanut butter and other seeds and then of course rest.

However a couple of times this week it hasn't happened in this way and my blood sugar has remained more stable and a bit lower and I haven't needed to eat but it has taken a lot of added fat to my diet to achieve this. This alone spurs me on.

As was said by another poster on this thread, all I have to do to throw this off is to eat too much carb with a meal and I will feel sleepy and very lethargic.

Pam

 

[MEPatient345]

1. When I tried fasting on different occasions for a day or more I felt somewhat better and symptoms improved.
2. When I ate even healthy meals with a regular amount of carbs this would commonly cause fatigue, exacerbation of symptoms/PEM, or even full crashes if the meal was large and I was already overexerted.

Darn, I opposite of this. Carbs often made me feel a little better. And fasting.. forget it, I couldn’t make it one day! I am 2 weeks into keto, and it sucks for me so far as I’ve mentioned. Definitely wondering if it’s not going to work for me, but want to do at least 6 weeks to give mito’s a chance to regenerate. Also am only getting my blood meter today or tomorrow so don’t know how much in ketosis I have been so far.

 

[CJB]

Key for me has been hydration and electrolytes. Vertigo was a big problem at first but the thing that ended up helping the most was figuring out how to stay hydrated.

I've been low carb for a long time but just got serious about keto about 6 weeks ago. Most dramatic has been being in the morning sun and having it actually feel good

I doubt this is a cure, but it's the most impactful treatment I've tried.

 

[Mary]

• When I tried fasting on different occasions for a day or more I felt somewhat better and symptoms improved.

• When I ate even healthy meals with a regular amount of carbs this would commonly cause fatigue, exacerbation of symptoms/PEM, or even full crashes if the meal was large and I was already overexerted. As my severity got worse it was easier for a standard meal to do this.

In general I don't do well with fasting, I don't know if .I will be able to do the 2-day initiation fast you recommend. And also I've tended to eat relatively low carb for a long time - e.g., no pasta, very little rice, one piece of toast with eggs, not 2 and so on. So my meals in general don't affect how I feel as far as I know. Years ago before I got sick I do remember eating a lot of sugar one day - doughnuts at work - and felt like crap that evening, but that was rare for me and I can't remember the last time I had a doughnut!

But I do tolerate ALA. I want to give keto a try anyways. I'd like to lose about 15 pounds and even with being as careful as I am with food, it's almost impossible for me to lose weight. And I'd really like it if it helped with sleep. I take so many supplements at night to get through the night! And if it helped anything else, that would be great. My blood sugar is always near the top of the normal range, despite being so careful so it would be nice if that went down too.

One my sons has done keto and talks very highly about it, so I plan to give it a go! And am definitely going to get the meter you recommend

 

[Mary]

@leokitten - okay, a few more questions - I'm guessing you measure your ketones twice a day? The strips are $1 each and at 2 x a day, that's $60 a month just for the ketone strips - is this accurate? That's a bit pricey for me - do you think testing once a day would be enough? Or perhaps 2 x a day just initially?

And do you need a new lancet each time you test? I don't see where ketomojo sells lancets separately, apart from this accessory packet which includes 10 lancets for $14.99, which would be $1.50 a lancet … I know it includes the lancet device but if you just want lancets, what do you do? Or can you re-use them over and over?

Thanks as always for all your help!

 

[leokitten]

@leokitten - okay, a few more questions - I'm guessing you measure your ketones twice a day? The strips are $1 each and at 2 x a day, that's $60 a month just for the ketone strips - is this accurate? That's a bit pricey for me - do you think testing once a day would be enough? Or perhaps 2 x a day just initially?

And do you need a new lancet each time you test? I don't see where ketomojo sells lancets separately, apart from this accessory packet which includes 10 lancets for $14.99, which would be $1.50 a lancet … I know it includes the lancet device but if you just want lancets, what do you do? Or can you re-use them over and over?

I don’t measure glucose + ketones twice a day, usually only once (and not first thing in the morning). It’s very important to do glucose and ketones always together and calc your GKI. As weeks go by and you know your eating plan continues to put you into deep ketosis then you need to measure less and less.

It’s fine to measure twice a day in the beginning to help guide you. Keto Mojo have the least expensive strips by far. Only the ketone strips are $0.99 each, the glucose strips are $0.36 each.

I reuse lancets like three times. The Keto Mojo lancet device uses a standard type of lancet that a lot of manufacturers make. E.g. you can get 300 for $11.99 on Amazon (e.g. Care Touch Multi Colored Twist Top Lancets 30 Gauge, 300 Lancets https://www.amazon.com/dp/B07199BSMC/). Don’t bother with that accessory pack.

 

[leokitten]

In general I don't do well with fasting, I don't know if .I will be able to do the 2-day initiation fast you recommend. And also I've tended to eat relatively low carb for a long time - e.g., no pasta, very little rice, one piece of toast with eggs, not 2 and so on. So my meals in general don't affect how I feel as far as I know. Years ago before I got sick I do remember eating a lot of sugar one day - doughnuts at work - and felt like crap that evening, but that was rare for me and I can't remember the last time I had a doughnut!

@Mary I don’t know how many stories I’ve read where people say they were eating a low-carb diet for a long time and when they finally got around to doing blood measurements they weren’t in ketosis at all.

ketogenic diet != low carb

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

Since we have ME, a very serious disease with a metabolic component, for those PWME where it could work I believe it will only work if we are going to therapeutic levels of ketosis, similar to other diseases where this is used as a treatment (cancer, epilepsy). Therefore we have to manage what we eat religiously and have to accurately measure our GKI from blood at regular intervals and make adjustments if needed.

We cannot do this diet the way healthy people might, where they can sometimes wing it and still get benefits.

 

[sb4]

God dammit, even though the last couple of attempts at ketosis where fairly bad for me, you've convinced me to have another go. I hope you're proud of yourselves.

This time I'm going to retry ensuring electrolytes aren't a problem by LoSalt + Natural Calm + Lemon drinks and also Cocoa powder + butter hot chocolate drinks.

I think I could have gone too low protein in my last attempt, either way I got hit like a truck on day 3, so probably when glycogen got depleted. This was way more extreme than keto flu ( I hvae previously been in keto no problem). This could be thanks to low adrenals (adrenalin is needed to stimulate liver to gluconeogenesis?), adrenals work well with sugar + vit C (I have low on this as per OAT).

If I do get hit by truck on 3 day again I will take high dose BCAA assuming the reasoning is not enough TCA intermediates. If this does not work I will just take to eating 50-100g carbs every 3rd day.

I will eat meat, veg, eggs, cheese, butter. Try to eat more of the latter 3 to prevent excess gastroparesis.

 

[Mary]

@Mary I don’t know how many stories I’ve read where people say they were eating a low-carb diet for a long time and when they finally got around to doing blood measurements they weren’t in ketosis at all.

ketogenic diet != low carb

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

Since we have ME, a very serious disease with a metabolic component, for those PWME where it could work I believe it will only work if we are going to therapeutic levels of ketosis, similar to other diseases where this is used as a treatment (cancer, epilepsy). Therefore we have to manage what we eat religiously and have to accurately measure our GKI from blood at regular intervals and make adjustments if needed.

We cannot do this diet the way healthy people might, where they can sometimes wing it and still get benefits.

I agree with everything you said here. I know I haven't been doing a keto diet by any means. Murph said he cut down on his carbs and lost weight just like that, and I've done that for years with little result - it keeps my weight in check but losing is very difficult. And carbs don't seem to affect me the same way they affect you. That's why I mentioned I'd been eating lowish carbs - but I know it was nowhere near a ketogenic diet.

Again, I appreciate so much all the information you are sharing - it's invaluable to me!

 

[Mary]

God dammit, even though the last couple of attempts at ketosis where fairly bad for me, you've convinced me to have another go. I hope you're proud of yourselves.

 

[anne_likes_red]

I use electrolyte drops which contain quite a bit of potassium. Also increase intake of salt and use topical magnesium as needed. I've never needed electrolytes longer term (after ketosis is comfortably established) but in that adaptation period at least they're very important....perhaps especially so if you have ME? When lowering carb intake you lose water (and electrolytes) and without adding some in you'll feel pretty crappy. If you're going into ketosis in summer months be even more careful would be my advice.

 

[leokitten]

I agree with everything you said here. I know I haven't been doing a keto diet by any means. Murph said he cut down on his carbs and lost weight just like that, and I've done that for years with little result - it keeps my weight in check but losing is very difficult. And carbs don't seem to affect me the same way they affect you. That's why I mentioned I'd been eating lowish carbs - but I know it was nowhere near a ketogenic diet.

Again, I appreciate so much all the information you are sharing - it's invaluable to me!

@Mary sorry my intent got lost in the message. My reply was really centered around the sentence you said that you’ve been eating low-carb for a long time but it hasn’t improved your ME symptoms. Hope that context makes more sense now, I feel this diet could significantly help a subgroup of PWME, though my hunch is it must be done religiously and achieving therapeutic ketosis levels to do so.