First time in remission with ketogenic diet

In case anybody is interested, I'm aware that attempts are being made to put together a trial of the keto diet with patients in the UK. As it's only at the planning stages at the moment I can't give any further detail than that yet.

 

I’ve just been listening to Dr Myhill talking about Keto and right or wrong her tone of voice and the zeal of her approach made me reach for the off button. The original poster talked of remission, what’s your situation now? Did it work?

 

*the other bassist waves

I doubt I will ever be in remission as I’m over 20yrs in. If the question out is am I better? Absolutely. I made the choice to try Keto for a few reasons but mainly as I was struggling to drop weight through activity or lack of. I have seen a continued improvement, especially when being more strict in adhering to the rules. Energy was quick for me personally, fatigue fell away from its worst. And example of this might be that I might rest rather than sleep during the day. I’ve noticed on reintroduction of carbs that I can feel pain again, but I continue the medication I’m on. I have found lately that having lost the weight chocolate especially requires eating in its totality on sight. The priority, perhaps with your timely intervention is that I drop the treats of sourdough and milk chocolate. Toast though is a temptress.

It makes sense to me that I’m closer to caveman than some others, less evolution to get the system used to eating all the farmed processed food. Finding natural and local produce where possible has uK sure helped. I’ve sunk a lot of sugary drinks over the years to replace expelled energy or fight that days fight.

Did it work? For me it did, especially with the inclusion of fasting and coffee. Does it fix? Perhaps it would over a longer period but it’s been too soon and I’ve not been strict enough.

Would you consider it? There is a lot of diet restrictions and research to combat. Menus are effort driven if you want a real veritable choice.

Cheers

 

? @leokitten ?

 

Having done low carb before I know it works for weight loss, and I know it’s a living hell for months with huge consequences for energy! Effort wise, what am I willing to go through? Well if losing carbs will fix the problem I’ll do it. For a mild increase in energy, I don’t know.

 

I didn't do it for all that long, a couple of months, but the results were 'modest'.

Nowhere near a 'healthy' persons capabilities, nothing even close to allowing me to work even a couple of hours a day, at home.

However 'modest' was enough to significantly increase my capabilities, to allow me to actually do and complete small tasks, and this is the important bit, as they needed doing, not as a result of months long irritation that they still hadn't been done.

This is not my 'normal'.

I was not doing keto on it's own, I was, and have been for several months, using a few basic supplements aimed at improving my circulations health.

These do appear to reduce the severity and duration of PEM, and also increased my cognitive ability enough so I could understand what keto was.

Previously I had seen it mentioned but had largely ignored it as it seemed too complicated to even consider.

I will be resuming it, as and when I am able.

 

I didn’t find it close to living hell, I actually found the food plan enjoyable. I’m not in a chronic period of my illness but the improvement is more than modest. It feels very personal as we move through our own journeys, I am very lucky to have a strong and supportive wife who cares for me and enables me to work. This support is needed, there is a period of huge improvement at the beginning and it’s very much with it.

You can have the odd potato or chip but I think it’s sugar that needs binned. That’s the crash boom element has been a crutch for me, no longer. The next is ditching the poorly produced and manufactured food. Food made by robots and using mass produced chemical laden food. Does our illness come from chemicals in our environment? Perhaps it does. I grew up in a rural farming space, played in fields, wore synthetic clothes and washed them in chemicals. Ate sugar laden corporate capital meals that made life easy as advertised.

For now I cycled 20km yesterday and today I’m at work. This wasn’t imaginable in April.

 

Can someone explain to me the difference between intermittent fasting, fasting and starvation? I've read about a man that fasted, by choice, for about a year. (He was very overweight.) I've read about ordinary people voluntarily fasting for a few days, a week or two or three, or a month. It seems to me in those circumstances that the two conditions (starving and fasting) are exactly the same other than in how they are spelt. And both of them should be spelt "starvation".

I've read a few articles on the subject and the proponents declare that if it is done voluntarily it is fasting, if it is done involuntarily it is starvation. They also claim that the body somehow knows the difference and acts differently. In starvation people run out of nutrients, whereas in fasting they don't. It sounds like wall-to-wall BS to me. Could someone please explain why it isn't?

 

Coincidentally my sisters and I have just been having a WhatsApp conversation about fasting. I do not have the the stomach ( ha! ) to talk about it more but this would make a good separate thread @Arnie Pye

 

I don't think that definition works. People often starve themselves voluntarily--for politics, mental health or other reasons--and fasting doesn't usually involve total denial of sustenance.

Intermittent fasting, for example, is eating all your meals within, say, a four-hour period and then fasting for the other 20. I know some people who love it, but it's really not for me, and I'm not sure it would help pwME. It's much less gruelling than normal fasting, because you can eat as much as you want in that four-hour period.

Some people also take their fasting to the next level with a 'juice cleanse' or similar, where you limit yourself to smoothies and fruit and vegetable juices up to a couple of days a month instead of totally going off food. There's a degree of self-control there, but it's not quite at the level of self-denial or self-punishment. I don't think that's quite starvation, therefore, but there's no solid food, so it's certainly getting closer.

When Muslims fast, for example, they only drink water in the daylight hours [ETA: actually, most don't drink water either], but eat plenty in the early hours before sunlight. That's more like intermittent fasting than those political prisoners who go on hunger strike. And there exceptions to the fasting rules, so that people who are sick, vulnerable or frail can eat if they want to. Again, that makes it not the same as starvation.

Some few people do voluntarily avoid eating anything altogether (including smoothies or juices, which contain more nutrients than water alone) for specific stretches of time, but that's usually for religious or political reasons. At this point, it might be better thought of as starvation, because it's not just restricting food but eliminating it altogether.

Starvation, to me, involves not eating at all for several days or even weeks. No juices, no late-night feasts, no breaks. Fasting would appear to be different because you don't completely deny yourself sustenance.

 

You're right, actually. I'm thinking of my friend, and I think she just breaks that rule because it's so hard. Bad memory!

 

I haven't read this myself so far:

https://chronicallycaroline.com/201...ting-started-on-a-ketogenic-diet-with-me-cfs/

 

Nice find, thanks for posting.

 

Can any of those who’ve been doing keto update their condition please?

 

I think it’s worth sticking with. A cure? No. Of course not! But worth the effort? Yes, for me anyway.

 

I haven't posted for a long time because I now visit this site only occasionally. This is because I have had such a marked improvement, which I attribute to adopting a ketogenic diet with time restricted eating, that I am too occupied with other things.

It is only a partial remission though and doing these other things does exhaust me; there is nothing left for anything else.

So some facts about my situation. I am female, almost 70 years old and gradually succumbed to fairly mild ME/CFS about 20 years ago, with no obvious trigger, though severe stress (sudden death of a spouse) was presumably a factor. I had a remission period of about five years, then relapsed about 10 years ago. Then I got steadily worse, though never more than moderate.

I have long eaten a very healthy, lowish carb diet; no processed foods, plenty of vegetables, unrestricted high quality fats, plenty of protein, but about 18 months ago I came to realise that my blood glucose control was far from ideal; I was prediabetic. This galvanised me to adopt a ketogenic diet, and this thread, alerting me to the possibility that it might help the disease, was an added inducement. Adapting to very low carb was not difficult for me, given my previous eating pattern. Time restricted eating took more getting used to and I eased into this gradually. At first I just skipped dinner a couple of times a week, gradually working up to two meals every day, then I gradually worked up to one meal a day for four days a week, two meals for the other three days.

I did this because I observed that one meal a day triggered weight loss. Over about 12 months I have lost all the weight I put on since getting sick - 15 kg. Now I am back to two meals each day. I choose breakfast and lunch, but many find lunch and dinner better. It doesn't matter, the point is to give the body a decent time - 16-18 hours to clean out glycogen stores, mobilise fat stores and do its cellular housekeeping.

The other thing I think is important, particularly if you adopt a ketogenic diet more or less permanently, is ensuring your gut flora are well fed. To this end I incorporate prebiotic foods such as green banana and raw potato (no carbs if uncooked but rich in resistant starch to feed gut bugs), onion, asparagus etc as well as a variety of concentrated prebiotic fibres (inulin, psylium, larch extract, PGX, baobab, acacia gum, pectin, XOS, GOS) into my daily diet.

I was delighted with the weight loss and with my blood glucose measurements returning to a healthy range, but very gradually I began to realise that I was able to do a bit more. At first it was just imagining I could do stuff, then I had the motivation and ability to actually do it. I started walking and stretching, at first just 5 min each with a rest in between, but I was able to build up to 15 min each. (When I can do 30 min each I'm going to try yoga classes again.)

Then I had the energy to conceive of a project to replant my front garden. In a former life I was a passionate gardener and had a beautiful garden. This had been totally neglected and fallen into disarray as it became too difficult to find reliable help with garden maintenance. In the end I got someone to remove all the plants from my small front garden to try to get on top of a serious weed problem, and there it remained vacant and ugly, offensive to me but I couldn't do anything about it.

Gradually I was able to come up with a plan and after getting someone to dig over the soil, went shopping for plants and started planting, just a little each day. I must say this did utterly exhaust me and I had to take a week out in the middle to do nothing but rest, but I did it in the end. I've also made a plan to tackle the back garden, though for that I will need help and it will have to wait while I do other things.

Since the garden success I have done other things that had previously been impossible; I've been on a 5 day trip and am planning a two week trip next year; my creativity is returning and I made jewellery for family and friends for Christmas; I've had friends over for dinner. I can't do anything else when I undertake such projects and I need a good period of doing nothing afterwards, but it is a vast improvement on getting tired just from contemplating such activities.

So I would say it's definitely worth a try, both the ketogenic diet and some sort of time restricted eating.

I would also strongly recommend the link in the post above from @Dolphin. The resources listed in the blog are all ones that I found invaluable in guiding my dietary choices and settling on the time restricted eating pattern.

 

https://www.jwatch.org/fw116206/2020/01/03/mediterranean-diet-named-best-overall-diet-2020

I think I'm probably going to want to see research evidence before I try to put myself through it. I have done strict diets in the past e.g. anti-candida but keto looks demanding. Unfortunately, surveys of treatments tend to show that pretty much every treatment is said by a percentage to help, some of which I find hard to believe, e.g. homeopathy, so I prefer to see stronger research evidence.

 

@Dolphin

I think keto is easier than any other diet I've ever tried, although I admit my carb and sugar addiction is a stumbling block for me with any kind of diet I try. My biggest issue is still wanting to eat when I'm full!

If you want some papers and articles on low carb and/or keto these links might be of interest :

https://www.lowcarbusa.org/papers/

https://www.lowcarbusa.org/articles/