First time in remission with ketogenic diet

I'm on day 10 of doing this strictly. Fairly quickly I noticed shifts (losing water weight, keto headache) and definitely my blood sugar levels have evened out & I don't have cravings for food like I used to. However, overall I feel much worse I think I should at least give it a go for a month. Has anyone heard of anyone feeling worse then better after the first two weeks or so?

 

I think different people have different adjustment times. I was already eating low sugar, and fasting a bit so was perhaps more fat adapted. It got easier as time went on. I took extra salt, some LowSalt which has Potassium Chloride as well as Sodium Chloride to stave off headaches. I also eased my way to eating fully low carb, ie during the week before my START date I ate only one low carb meal on each day. Then had the big cupboard clearout and got going.

 

It’s strange though because I fit the symptoms of being adjusted but my ME is worse. I think it just doesn’t work for my body for some reason. Ah well!

 

And this is where we just don’t know enough about ME, or even individual differences in healthies.

But I agree- if it’s not working change things.

 

It took a few weeks for me to adapt, and I don't think I've fully adapted even now. I'm not even very strictly low carb yet. I'm still suffering from bouts of extreme irritability. Whether it is the diet change or some other cause I really don't know. But I've had a big improvement in one of my gut symptoms, and I've lost 10 pounds, so I'm going to stick with it for now.

 

Yeh that sounds fair enough. For me it’s not really the Keto side effects but the fact that my ME itself seems a lot worse - I feel a lot weaker and my functioning has gone down. Reading around different forums it seems there are some people, healthy or not, who just don’t do well on it.

Overall it seems like it might be worth it for you though, glad it has helped!

 

Hi @Nathalie Wright - Definitely I’ve read many stories of people requiring a lot of time to get adjusted, here, on PR, and elsewhere.

Like others have said, everyone’s body is different. Also to repeat what was mentioned, in the beginning you lose quite a bit of electrolytes because insulin levels go down (which is good) and that causes one to pee more. Initially this might have a negative effect on PWME who have autonomic issues.

 

I understand. It’s not really autonomic issues though it’s the effect on my core ME symptoms. Maybe it’s making me feel worse to the same extent it makes some feel better? So I’ve stopped now.
Who knows, maybe if I’d carried on it would all have reversed but I didn’t want to take that risk.
Seems like a great tool for some though.

Edit: I’m glad I did it though! I am much more aware of the effect of carbs & my blood sugar and dont feel any urge to go back to my previous sugary diet.

Edit 2: I think I feel better now (just off keto) than I did before I started... so maybe it did something?

 

It's your call @Nathalie Wright and do what you think is best. I've already crossed the "giving medical advice" line twice in this thread and had to be edited.

The state of treatments for ME and their supporting scientific evidence is extremely poor, it's really unfortunate and a major reason many of us are here on these forums. Everything is a total shot in the dark and that is what we have to do... there currently is no other way.

There is no good and direct scientific evidence for any treatment out there, not Valcyte, not Ampligen, not anything. If you read the studies on these drugs closely the evidence is very, very poor, in fact it’s almost garbage. They don’t work for most people and, for those where it does, they have absolutely no real idea why. ME specialists try them because of anecdotal evidence from some patients improving on them. None of the treatments they have people try have any real scientific grounding that they work, and the only drug that ever went through proper gold standard phase II and III trials was rituximab and it failed.

So treatments are just trial and error, that’s what every ME specialist does because they do not know absolutely anything. If you take Valcyte for example, it makes most PWME feel like complete crap when they start taking it, and for those where it worked they feel like crap for many months before they see the improvements. So who knows what do to when you try a treatment and it initially makes you feel worse, there could be so many other factors or issues in a person not even related to ME that make one feel worse initially. I do not know what other issues you have.

I only want to help people as much as I can. If doing a treatment is going to make one permanently worse than absolutely it shouldn't be done. But, from my experience, if there is some good scientific evidence suggesting a specific pathological feature in ME (i.e. glucose pathway TCA cycle impairment, metabolic dysfunction) then it would make sense to try treatments that either circumvent or attack the issue head on.

 

@leokitten - do you have any recommendations for a book or manual to follow?

 

This is key. A lot of people on keto diets may receive substantial benefit from inadvertently avoiding fructose or foods that trigger mast cell degranulation/histamine release. There's a lot of overlap in these diets. That said, I've always felt better when I'm keto-adapted. Not remotely a cure, but significant cognitive benefits.

The most significant improvement I ever had was after a ten-day water-only fast. But that's not exactly a long-run strategy Unfortunately, as time has gone on, it's become harder and harder for me to fast.

 

And to some of @Trish's other points (SIBO is definitely another element.), diets are like sauna or other whole body/systemic interventions. They move so many different variables at the same time, it will always be impossible to know precisely what mechanism(s) underly the benefit. That makes them hard to research, but are a part of why the right match can help so many different people/conditions.

 

The web. There is so much free and quality info out there on keto... honestly though I don’t think it’s complicated at all to follow, so wouldn’t justify a manual or book, especially one that you pay for!

This week I haven’t even been tracking anything with my keto app, just as an experiment and to take a break from it so I can use more time and energy on my research work.

I know the current food items I have in the fridge and their portions and macros so well that i can keep track in my head and stay in deep ketosis without the app. I won’t do this most weeks but it’s good to know when I want a break from all the management it isn’t a problem, and with the blood monitoring and GKI it always tells me if everything is truly going well.

 

DietDoctor.com has some really well Produced material.

Lots of free stuff. A free first month subscription, and a small monthly fee after that if you continue. Loads of recipes. Also has a two week programme to get you started.

I did the first week of their two week intro. Then just used the site recipes for a while. Subscribed for an extra month after the free one. Then took a break from the site, but have just gone back after I was offered another free month.

 

Any of you guys had any luck making keto deserts? I need a way to increase fat with out much protein and carbs, and without it being gag inducing. I like chocolate so I have previously tried 99% chocolate but I can't stand it, tastes bad and leaves a brutal aftertaste. I think there is a mineral or something inthere that my body doesn't want in excess.

I tried yesterday to make some low carb chocolate but my chef skills are abysmal. I melted about 7tbsp cocoa butter, added 1 tbsp cocoa powder, and 1 tbsp stevia. Mixed it together and set it to dry in the fridge. It was horrific, had the gag factor of eating pure fat with the horrible taste of strong dark chocolate + aftertaste.

I then remelted, added egg yolk powder (a few scoops) and some milk. Refrigerated and tried again. Only slightly less horrific.

What am I doing wrong here? Why does such a small amount of cocao powder taste so strong yet I'm able to eat milk chocolate fine and enjoy it?

 

Do those of you trying keto hope/intend to be doing it in the long term, or is it seen as a short-term intervention during which there's some sort of metabolism reset or general healing process and then you can go back to a normal diet?

 

Something in did in my 10 day stint (lol) was chia seeds, almond milk, pure cocoa powder, peanut butter + a few drops of stevia for sweetness. Leave it over night and because of the chia seeds, it thickens into a dessert. I used 2 tablespoons of chia seeds, 1 table spoon peanut butter, about 150ml almond milk, 1 or 2 teaspoons cocoa powder. you can also make various shakes without the chia seeds for something quicker.

 

Long term diet change in my view.

I have heard people say a fast of several days can reset something long term, but that it not my experience. Fasting intermittently has helped me but the effects are not sustained long term in my experience

 

I'm expecting to stay low carb for the long term. I haven't yet tried to eat a diet that will get me into ketosis. If/when I eat a proper keto diet I don't see that as being a long term option - but I might change my mind when I finally get there. I'm definitely hoping to stay low carb (and possibly keto) in the long term for two reasons.

My first reason is that I am a sugar addict - a severe one. Any time I slip from my low carb diet I find I have to exert a lot of will power to get back into it. But if I stay low carb long enough my sugar cravings almost vanish and are much easier to control. If I've eaten a lot of sugar I feel awful in all sorts of ways and it can last for several days.

My second reason is that one of my most painful issues occurs in my gut in one specific place. I've discovered that this debilitating pain can be reduced by two things - taking a particular antibiotic and/or avoiding sugar/carbs. I have used antibiotics a few times to reduce the pain but I don't consider this to be a good long-term way of handling this particular problem. I'm at the mercy of doctors who might refuse to prescribe at any time. But controlling my diet means I can control my own pain to some extent. I still need painkillers, so I can't avoid doctors altogether, unfortunately. I just wish they were interested in curing the pain I have, but they aren't.