First time in remission with ketogenic diet

I do so well in it, that it is my permanent state now (going on 2 years). I feel very much better in it. I can tell a huge difference on what I can do vs when not on Ketosis, I break it every time I get the rash too bad (i do get keto rashes) or the week before my period, I also do Intermitten fasting most days.
My update is that I will eat this way for ever, the good energy keeps me motivated.

 

https://twitter.com/user/status/1224732512968159233

https://twitter.com/user/status/1224732845136121859

 

Following up to my OP, I've now been on this diet for more than 1 1/2 years. Like most others here who have been on it long-term I haven't had any side effects or worsening from it. TLDR: following a more healthy long-term version of the diet continues to significantly help with symptoms but not like it was in the beginning and not enough to be able to increase exertion to where I want it. Though I have the circumstance that I am continuing to work as much as possible and because of that I'm constantly overexerting and not able to control my exertion, so my results with the ketogenic diet are somewhat confounded.

I've found that my body doesn't want/like to be in deep enough ketosis long-term to continue the significant ME symptom improvements I was experiencing the first 3 months unless I could keep ingesting fat at very high levels, i.e. 75-80% fat, only 5% carbs (both religiously measured and counted in an app), and most importantly making sure I get enough total calories.

Current scientific research in this area is compelling enough to show that this amount of fat in the diet on a daily basis can be very unhealthy for your cardiovascular system. All concentrated fats (saturated from meat and diary, and yes even olive and healthy polyunsaturated vegetable oils) cause significant endothelial dysfunction which will eventually result in cardiovascular disease. The evidence on what happens long-term with deep ketogenic diets here is still inconclusive, but I do not want to take the risk given the history with such drastic diets that the long-term consequences haven ended up being more negative than positive.

It becomes very difficult long-term to eat 75-80% fat and enough total calories in a healthy way, so I ended up up just eating less because I was exhausted from ingesting so much fat. I love vegetables and found that even only eating keto-approved vegetables, adequate protein, 25-50 grams total carbs and whatever I could in healthy fats resulted in ketone levels that are decent but not high enough like the first 3 months and not high enough to give that huge symptom improvement I had then.

That being said, I think I have been desperately wanting more results from this diet than other pwME. After having to stop working temporarily due to decline, I've since been continuing to work as much as possible since seeing improvements with the diet. With my work field it's not possible (even part-time) to control my exertion, I have deadlines and the work requires a great deal of mental exertion and cognitive load. So it's been a hellish struggle because I continue to constantly crash and have PEM, though the keto diet has made it a bit less debilitating than before.

So I feel my keto diet results are confounded by this fact. If I didn't have to do anything and could completely control my exertion most of the time I wonder how different things would be long-term. Though I would be completely housebound and mostly in bed as I was starting in 2018 if I didn't follow a version of this diet. Being on a healthy, but regular, diet during my years of ME before that was a definite factor in my decline.

EDIT:
I should clarify what I mean here by a regular diet being a factor in my decline. That is definitely not to say that in general such a diet would cause ME to decline, to me it's overexertion that is the major factor.

Given my particular circumstances, during the first 6 years of the disease where I was pushing as hard as ever to continue to work almost full-time, with all the weekly crashing, constant PEM, and overexertion, in hindsight after being on a ketogenic diet I could see that I was damaging my body by exerting and using more energy than my body could make. From my observations, I feel that this constant push/crashing contributed to the slow but steady decline. The keto diet, to me, improves energy generation and helps with PEM recovery, therefore significantly reducing push/crash damage. A regular diet doesn't seem to help at all with that, therefore I attribute it to a factor in my decline (other than push/crashing).

 

Thank-you for taking the time to write a clear and honest assessment of your experience on Keto.

I expect there may be (if not in your case, for others) the confounding fact that if you worked less (or not at all) keeping to a ketogenic diet is prohibitively expensive.

But that observation aside I'm wondering where this leaves you now in terms of diet?

I'm not sure I understand this part. Could you elaborate?

 

I understand, I'm just giving my experience and my N=1 observational experiments.

From getting ME in January 2013 until 2018, when I slowly declined enough that I had to stop working temporarily, my exertion levels were pretty much the same, my environment was the same, my diet was the same. No treatment ever worked. After the acute phase of ME the first year or so I felt like it was going to improve but it was just converting to the chronic phase where symptoms and the disease changed. It didn't get better, the chronic phase has been a stable but slow and steady decline. My experience here I think is typical for people in the first six years.

No treatment ever helped with symptoms except this diet. I tried so many treatments and spent tons of $$$$. No placebo effect, no nothing. Other than the keto diet the only "treatment" that has ever helped temporarily was aggressive bed rest and no exertion for a week or more. I've never had any sudden, unexplained fluctuations in my ME symptoms, all changes were following a good deal overexertion. My ME severity level had been stable and only slowly declining.

The keto diet (and intermittent fasting) changed this course. It also is a treatment that causes improvements quickly after starting. I've always complained to others with ME that treatments they've said worked took so long to work and therefore no one could tell if it were just fluctuations. To give more evidence in support of what I've written above, I have experimented with stopping the diet and going back to eating a regular healthy diet a few times in this 1 1/2 years. Within 1 week or so I am back to where I was before the diet started and become housebound and mostly in bed. Symptom severity changes start within a couple days of going back to a non-keto diet, where I clearly start becoming exhausted much earlier in the day and symptoms become much stronger and overwhelming much quicker than when on the diet.

So to me the diet improves my symptoms quickly after starting and my symptoms decline again quickly after stopping. I know this not a double-blind experiment, but it's my personal experience given my disease course and my specific circumstances. Nothing ever worked before it. There are also multiple other pwME would attest to the same experience that I've had even though all of this is observational here. I know for me this is not a placebo effect and eating a regular diet wasn't even partially circumventing what metabolic dysfunction is caused by my ME. I tried vegan and gluten free diets as well, they didn't work.

EDIT: I forgot to also mention that since this 1 1/2 years I'm not slowly declining anymore even though I'm still overexerting etc.

 

I also made a clarification edit to that post since I agree with you I do not want it to be take the wrong way.

 

Is there any suggestion as to why keto would improve ME symptoms? On the severity scale where did you start, and where did the diet get you to? If I were to try it I’d need to expect very convincing results quite quickly, as I don’t have the energy to manage a complex menu, or to cram large quantities of food into me. Meat is out of the question anyway

 

My belief is that it somewhat circumvents or alleviates a part of the cellular metabolic dysfunction at the core of this disease, or that it’s anti-inflammatory and counteracts part of some chronic inflammation driving symptoms, or actually both (which is what I really think).

Based on my user experience and what I’ve seen from others here and on PR where a ketogenic diet seems to help, it doesn’t appear to be severity related (excluding severe since no anecdotal reports?) One thing I don’t know is if how long one has had ME is a factor.

If you are wondering whether it might help, I would say from my personal experience how I discovered if it might work is when I accidentally fasted for a couple days (nothing but water) and by the end I noticed a significant improvement in all of my symptoms. It shocked me at first since nothing before ever helped me and as you know the symptoms of this illness are strongly present 24/7. Then I tried to fast again a few times on purpose and every time, if I fasted long enough, symptoms improved just the same.

 

From my understanding, a therapeutic ketogenic diet, not just low-carb like many healthy people do to get some ketosis but very low carb, is effectively a fasting or caloric restriction mimetic, at least during the first few days. In both treatments, your body changes and starts burning fats and ketones as the primary energy source when no glucose is available.

I’m just giving my experience as to how I found out, accidentally, that this treatment might help me after someone asked.

 

I think the answer is: we don’t know. There’s a lot of information about keto for normal men, and for various conditions, but since we don’t really know what’s going on with ME we can’t really know what’s going on with keto helping (or not).

What I’m hearing is that you want to try it if it will help but want to be sure it will help because it’s a big ask.

Fairly early on in my illness I was advised by a nutritionist to try very low carb (keto was not nearly as well explored then as now). I did try it but found it was truly awful and I wasn’t convinced. One of the biggest challenges for me was the complete lack of bland foods. It seems like a little thing but it makes every meal challenging for my gut (green leafy veges, protein, fat, ...all very hard on my gut). That, and the fact that I already avoid processed foods for other reasons so none of the ‘easy’ options were there. It seems to be horribly expensive too - you’re encouraged to skip all the good budget foods (all the usual starches, dry beans & lentils, root vegetables, ...) and live entirely on luxury foods like steak and salad.
(ETA: I’ve since found that resistant starch might be part of the answer for bland foods but I’m not sure that the amount of resistant starch in things like green bananas and cooked then chilled potatoes is really that much in total proportion. I do eat green bananas and cooked chilled potatoes though - because they’re easy)

So, I’ve avoided actively trying keto. But I have found some evidence to indicate that it might be helpful to me.
Also through fasting for other reasons (not diet gimmick, other health-related). I imagine keto might be a way to retain some of the advantages of fasting without actually starving. But I can also imagine we may find that it’s not necessarily a ketogenic diet as we define it now that’s needed.

I think we might find that the people who find keto helpful might be more than one group for more than one reason. I just don’t think we have all the answers yet.

If I were to try keto in ernest, I’d be inclined to have some way of testing ketones and do it for a significant block of time (eg 3 months to have enough data to cover other variables) so I could have reliable personal data out of the experiment. But currently I’ll be watching the research and seeing what comes of it.

 

Let's say I'm curious but sceptical, as I am with most things

 

How can ingesting fat make you exhausted?

 

Exhausted in the figurative non-ME way, like exhausted from having to consciously try to ingest so many fat calories per day.

 

I would believe that metabolomics would inform how functional each individual is in terms of converting food into glucose. I would presume that for some, breaking down fats is next to impossible, and if coupled with further difficulty in other ways of obtaining glucose, then that person would not do well with a keto diet.

I do not think that diet will be a cure to whatever the problem is. People have been experimenting with diets for decades now, and no one that i know has gotten better.

 

Very true. For me the first month or so the improvement in symptoms was so immense relative to where I was that it felt like a remission (hence the thread title). Especially too since nothing else has ever worked in any way.

But soon after that I started seeing that those initial improvements weren’t going to last and to this day I do not totally understand why the disease or my body reacted downward like that.

With this diet my symptoms still exacerbate, I still crash and still get PEM when I overexert. It just helps me do significantly more than I could before and helps with recovery. But it doesn’t bring me back where I was in earlier stages of ME.

 

i am sorry @leokitten. I think that regardless of how long we’ve been sick, we are yearning of recovering normal function and to be well enough to be our old selves again. It’s heartbreaking that scientific advances are so slow, that people are so sick and that it’s so difficult to access competent care. (And for you fellow Americans, you have to worry about being covered and have a physicians that is knowledgeable within your insurance network).

Can we have good news soon please?