First time in remission with ketogenic diet

leokitten

Senior Member
Messages
1,595
Location
U.S.
Hi @leokitten,

Crashes in what sense? Unexpected and not linked to over-exertion? I haven't.

I'll still have a PEM 'crash' if I over do it but the impact is not nearly as severe or long lasting now.

Overexertion crashes. The ones that typically last 3-4 days (at least with me) and are total hell, can't function, can't move, everything shuts down. I had one now after 2 weeks on the ketogenic diet (see my update in this thread). It wasn't like all my other crashes as I didn't get my usual warnings where all my symptoms would gradually build up since the ketogenic diet alleviated many symptoms. Just wondering what I might've done wrong and you are one of the best resources!
 

MEPatient345

Guest
Messages
479
I’m another ketogenic success story. I’m no longer housebound after many years. It took me a lot longer to see results initially though, but it was worth it.
@Ema How long did it take you to see results? I am about 10 days in, and no improvement on any symptoms yet.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
@Ema How long did it take you to see results? I am about 10 days in, and no improvement on any symptoms yet.
6 months. It took forever for my body to transition and it was very rocky at first. But I’d had a remission from a ketogenic diet in the 90s as well so I was very motivated to keep going.

I would track your ketones for sure because even on a low carb diet, I was barely in ketosis. It really took some fasting to convince my body to use fat again for fuel. I did the ProLon FMD several tomes with great results and that really broke me through.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
@Ema How long did it take you to see results? I am about 10 days in, and no improvement on any symptoms yet.

@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.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
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 (thank you @Hip :thumbsup: for the compendium thread) if I feel like another crash is coming.
 
Last edited:

MEPatient345

Guest
Messages
479
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.
Glad you are out of your crash @leokitten. No, I started this the day you posted it. Will have amazon keto sticks by Tuesday and will know then. However, my symptoms like nearly fainting on days 2 and 3 at end of glycogen stores, and then a slight improvement, but still having severe ME symptoms like weakness and buzzing in my brain and tinititus, tell my I’m in nutritional ketosis but not adapted yet and not getting quite enough energy from food. I’ve been pretty close I think to 20g carbs, if going over, only up to 30 or 35 tops with vegetables or nuts. It’s too difficult to be more accurwte as I’m in an extended crash because of this. My family makes meals and I can’t ask them to measure things out so am eyeballing everything!
 
Last edited by a moderator:

leokitten

Senior Member
Messages
1,595
Location
U.S.
Glad you are out of your crash @leokitten. No, I started this the day you posted it. Will have amazon keto sticks by Tuesday and will know then. However, my symptoms like nearly fainting on days 2 and 3 at end of glycogen stores, and then a slight improvement, but still having severe ME symptoms like weakness and buzzing in my brain and tinititus, tell my I’m in nutritional ketosis but not adapted yet and not getting quite enough energy from food. I’ve been pretty close I think to 20g carbs, if going over, only up to 30 or 35 tops with vegetables or nuts. It’s too difficult to be more accurwte as I’m in an extended crash because of this. My family makes meals and I can’t ask them to measure things out so am eyeballing everything!

Hi @Silencio - urine keto sticks are absolutely worthless and inaccurate (sorry to tell you this, also mentioned this in the OP). They will give you completely misleading info and then you will likely adjust your diet in the wrong ways.

Are you using Amazon.com, Amazon.de, or Amazon.uk in Portugal? I searched de and uk and there are dual blood ketone and glucose monitors for the same price as here in the US, approx 30-50 EUR. For example the "On-Call GK Dual Blood Glucose and Ketone Meter", although I don't know how well it's made and accurate it is, but I'm sure it's better than urine sticks. I'm sure there are other brands too and looks like very reasonable prices. Also, can you buy from Amazon.com in US and ship to Portugal?

Also another thing, and sorry to sound harsh, but I just want to ensure you are fully in ketosis for a month or so to know for certain if this diet will work or not on your ME. I truly think a lot of people try this diet in a handwavey kind of way and then when it doesn't work they think it's the diet.

If you can I would not have anyone, including family, make meals for you for the entirety the diet trial. If you are in a crash honestly the best thing to do is fast most of the time, lie in bed and watch tv, sleep, and only eat a few simple ketogenic things. Unless you are underweight or severe ME of course, but if you are slightly overweight or more then I’ve never heard of fasting or eating far fewer calories making ME symptoms worse if you stay in bed a don’t exert much.

If you remember from one of my earlier posts, you just have to eat things not meals, food totally deconstructed. I never use or need a scale or really do any measuring.

Have your family buy all the ketogenic food items and variety you want to eat and then just use an app, serving sizes and simple math, and nutrition labels to know exactly what macros you are ingesting. That's what I do.

You don't measure, cook or prepare anything at all. If people are preparing entire meals for you then you have no idea what you are ingesting. I also think just eating things is simpler and less cognitively difficult once you've set them up in your app and know your serving sizes.

For example this is one of my "meals":

10 medium black olives
1 almond milk yogurt plain unsweetened
2 cocktail tomatoes
5 celery sticks
3 tbsp tzatziki
1 oz blue cheese

The only thing I had to think about was the 1 oz blue cheese. But all I did was take the number of ounces on the label for the entire cheese, e.g. 5 oz, and divide it into 5 pieces. All the other items were super easy in the app to get the macros. All my "meals" look like that.
 
Last edited by a moderator:

leokitten

Senior Member
Messages
1,595
Location
U.S.
@leokitten An interesting thing to do is put together all nutrients needed for gluconeogenesis and see if you need supplementation (e.g. Manganese is easily obtained via teas/spices - herbs, turmeric, ginger)

Hi @Gondwanaland - I've had this intense, early crash carb-craving hunger as part of ME since pretty much the beginning. So even with a normal, plenty-o-carbs diet it's always happened. For that reason I don't think it's an issue with gluconeogenesis. I think it's one of two things, 1) I've used up all my ATP reserves body wide and that sends a strong signal to my brain to eat carbs, or 2) the part(s) of my brain which control hunger use up all ATP reserves and become totally dysfunctional telling me to eat carbs.
 
Last edited:

Gondwanaland

Senior Member
Messages
5,100
@leokitten I have read lots of testimonials from healthy people dealing with this same issue while trying keto.

When I had hormone-induced migraines, it would always start with an uncotrollable hunger, so it makes me think it is phenol-driven. What fats are you using? Both coconut and olive oil are very high in salicylates (phenols), so perhaps take a look into supporting glucuronidation.
 

MEPatient345

Guest
Messages
479
Hey @leokitten, thanks for all that. I hear you on all of it, although there are reasons I am doing this imperfectly!. I am severe, and there’s no way I can fast completely. I really need help from my family in bringing me food etc. I’m not underweight but only have about 5lbs to spare. I have been mostly doing what you said about small simple meals and trying to track.

It’s not easy to do this when severe because i feel so deathly ill, and there is always the fear that it will make you permanently much worse, and so far, I have been much worse. There are several stories on here about people becoming worse. Also, there is the potential that this works better for men, or just some people. (I’ve noticed that there are less stories of dramatic improvement for women). Because of that, I haven’t fully restricted myself some days from eating extra nuts or vegetables that might have pushed me up towards 30. But perhaps in coming weeks I can cut those extras and feel more sure I’m in ketosis.

Will look again at glucose meters, I believe the ones sold here at the price you mentioned do not come with lances included, and that the strips are much more expensive. Can’t order from the US.. Portuguese customs hold everything for ransom! It’s so annoying!
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
@Silencio - I completely understand... and am very sorry. It’s much more difficult for severe and low moderate PWME to start something like a ketogenic diet, since unfortunately it’s takes a lot of mental and even physical exertion to do, as well as possibly battling accumulated food sensitivities and other disease-related issues.

I am wishing the best for you and really hope your condition will improve. You know the drill, listen to your body and take things slowly. We are all here to help you in any way we can.
 

MEPatient345

Guest
Messages
479
Thanks so much @leokitten, and for all the tips!

I thought this was an interesting article, in that some of us who may not have been glucose or insulin sensitive when we got sick, could now be from being so sedentary / bedridden. It gives weight to what you have recommended @leokitten regarding us needing to do fully therapeutic ketosis, and measure blood glucose too.

Take a Vacation From Exercise? Your Body May Not Thank You
https://nyti.ms/2KlPqPe?smid=nytcore-ios-share
 

dannybex

Senior Member
Messages
3,576
Location
Seattle
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.

I don't want to take this thread in a different tangent (perhaps we should start a new one), but for me the ROS/antioxidant balance is the $64,000,000,000 question or puzzle, because we need ROS in order for our immune system to help as you say kill off pathogens, but we also need antioxidants to help w/mitochondrial dysfunction.

And by the way, we also need oxygen for mitochondrial function.

So how do we know if we're imbalanced in that regard -- how is that determined -- and how do we keep or restore that balance? Again, perhaps a topic for a separate thread.
 

Murph

:)
Messages
1,803
I wanted to report in. Inspired by this post I've been following a low carb diet and also doing calorie restriction. ( I'm not trying to do full-on keto). I'm up to 13 days on the diet now.

I had one unusually prolonged crash, which I attribute to cutting back on my consumption of whey supplements (Only 48 hours, but I'd almost forgotten what a real crash feels like. Anyone who has been on this site a while may be aware of the quasi-miraculous effect amino acid supplements have on me.)

But mostly I've felt pretty good. The good thing about eating more fat and protein is the carb restriction is not nearly so bad. I don't feel hungry - I feel full. It has been relatively easy, frankly.

Digestively, I think I miss carbs though. Resistant starch seems far more benign to my guts than endless fibre and fat.

The best part is I've lost a bunch of weight. I estimate 3.5kg has fallen off me so far! I plan to see if I can scoop off a further 3.5kg in the next few weeks.
 
Messages
10
Location
Birmingham
I wanted to report in. Inspired by this post I've been following a low carb diet and also doing calorie restriction. ( I'm not trying to do full-on keto). I'm up to 13 days on the diet now.

Hi Murph, I was wondering which low carb diet you are doing?
Josh
 
Back