Lack of chatter about the Ketogenic Diet

[Learner1]

We're all different.

Extremely low carb over a long period can stress your adrenal glands.

I'm finding going between low carb Paleo and ketogenic using beta hydroxybutyrate and C8 oil to boost the effect (and allow me to eat a few more carbs) is working well, along with thyroid and adrenal support (which I needed prior to changing my diet).

Its wise to look at the whole person as system of systems...if one system is misbehaving, it might be a good time to take a bird's eye view of what's going on across the body.

 

[ljimbo423]

I was low carb paleo for about a year, and within that time period I ate a strict keto diet for a few months. My health did not improve during that time, in fact, it slowly got worse. My energy improved slightly went I went back to higher carbs. My husband also has done a keto diet with no benefits.

The same thing happened to me on a very low carb/keto diet. Although I wasn't shooting for ketosis, I hit it anyway and it hit back! I felt very unwell and my level of functioning dropped a lot. Some of us get much worse on a keto diet.

I think it's what they call the keto flu and is suppose to pass within a few days or weeks. With me though, it didn't pass even after 6-8 weeks.

What I finally realized, was that I go into ketosis when my carb intake goes below 80 gms a day. I had heard that you need to get below 60 gms a day but not me. What I do now is keep my carb intake to at least 80 gms a day and I have no problem with a low carb diet.

 

[Basilico]

@ljimbo423 , I was in full ketosis (70%% fat, 25% protein, 5% carbs) for months. Neither my husband nor I ever experience keto flu, surprisingly.

We are currently experimenting with Ketone salts, with and without a keto diet.

Have you ever used Ketones?

 

[ljimbo423]

Extremely low carb over a long period can stress your adrenal glands.

That makes sense, especially if it is extremely low carb. I think the keto flu symptoms have something to do with up-regulating the mitochondria. If the mito are dysfunctional, which seems to be the case in cfs, up-regulating them somehow creates excessive oxidative stress or something, that causes the dreaded "keto flu".

Mito. create a huge amount of oxidative stress, even when they are functioning optimally. That still doesn't explain why some with cfs feel so much better on the diet. Unless it has to do with the different pathways that become dysfunctional in the mito. in different people? Do you have any thoughts on what might cause the keto flu?

 

[ljimbo423]

@ljimbo423 , I was in full ketosis (70%% fat, 25% protein, 5% carbs) for months. Neither my husband nor I ever experience keto flu, surprisingly.

We are currently experimenting with Ketone salts, with and without a keto diet.

Have you ever used Ketones?

Do you have any ideas on why ketosis made you worse? I have never used ketones yet, but I might somewhere down the road. I'm juggling so many supplements rate now it's hard to keep track and I'm not a very good juggler. I am interested to see how you do with the added ketones.

 

[Basilico]

At first, it didn't make me better or worse. I kind of just felt the same, for a long period of time. When I was eating an officially 'keto' diet, I felt the same as eating a regular low-carb diet. It wasn't until after I'd been low carb for around a year that I realized I had been very slowly feeling more malaise, which I didn't attribute to the diet. However, switching to high carb I suddenly got a lot more energy and it was then that I realized how low-energy I'd slowly gotten.

The only explanation I have is that some people might have more or less dysfunction in the pyruvate/carb cycle than with the cycle that relies on ketones. This would explain why many don't do better on a keto diet - if they are low in some of the necessary precursors, they might be just as inefficient at using ketones as the are using pyruvate. Those who do better on a keto diet probably have a more efficient cycle and all the right precursors.

Once we've got some more experience with the Ketones (which we are working on now, with diet variations and use of a precursor) I will post extensively about it. He took Ketones during a crash and it eliminated his PEM pretty immediately. We have to repeat that experiment to see if it was a one-time effect or possibly a new strategy for eradicating PEM.

 

[ljimbo423]

It wasn't until after I'd been low carb for around a year that I realized I had been very slowly feeling more malaise, which I didn't attribute to the diet.

That has happened with me many times, both with supps and diet. Then I change something and "bingo", I feel much better! That happened with some vinpocetine I was taking. When I first took it, I didn't notice any change in how I felt, just a really big boost in clarity of mind. Slowly over many days, I felt worse and worse, but it took a long time for me to connect it to the vinpocetine.

The only explanation I have is that some people might have more or less dysfunction in the pyruvate/carb cycle than with the cycle that relies on ketones.

That makes good sense, my thinking on that is along the same lines.

Once we've got some more experience with the Ketones (which we are working on now, with diet variations and use of a precursor) I will post extensively about it. He took Ketones during a crash and it eliminated his PEM pretty immediately. We have to repeat that experiment to see if it was a one-time effect or possibly a new strategy for eradicating PEM.

Good luck with that - you never know what is going to give that little extra lift!

 

[DoggerFisher]

I started a keto diet and within 3 days my CNS symptoms improved dramatically. I went from barely being able to manage any time on PC and not being able to bear noise, light, bustle, conversation, and really sore eyes to feeling much better in CNS and easily managing 3-5 hours on the computer, being able to read PR, having much steadier energy. However the trade off seems to be now I'm physically very bad 20 days in. Reluctant to stop and go back to where I was, am giving it a month in case it's "keto flu" which to all intents seems impossible to distinguish from ME anyway! Or is it that feeling better in the brain has made me "overdo it". How I hate that phrase!

 

[Gondwanaland]

the day before I had a total of 87.8g protein

How about low methionine? Ideally you should have tested Homocysteine on the same day Then we would know for sure what's going on with your Transulfuration pathway.

 

[gabriella17]

@bsw I absolutely 100% agree with you! I searched high and low for alternative therapies because I was so disabled that I was starting to have thoughts of suicide. I was willing to try anything. I first learned about the keto diet when I read "The Wahls Protocol", by Dr. Terry Wahls, a physician who has MS and had to quit her practice and was wheelchair bound. Dr. Wahls said in the book that, as a doctor, she had access to all sorts of trials and treatments, but nothing helped, so she researched and designed her own plan, using a ketogenic diet as the basis for her protocol.

Reading the book, I learned that the main reason she used the keto diet was because of the positive effect it has on the nervous system. I figured if that's the case, maybe it would help my fibromyalgia and ME. It took me a long time to really get going on the diet because of the physical tasks involved - I just didn't have the energy plus the OI made it hard to do anything in the kitchen. Finally, at my worst, I just stuck a pot roast in the crockpot and had that for my meals until I could gather more steam to make other things.

The effects were absolutely AMAZING!!! I noticed improvement within days. Significant improvement within a few weeks. One day in particular stands out as an example: I went with my daughter to a music festival. This involved a couple of hours of getting ready (makeup, hair color, the works). Driving 45 minutes to pick up my daughter. Driving another 45 minutes in to get to the concert. Parking, walking to the venue. When my favorite band there came on, I stood and rocked out the entire time. Then, walking back to the car. Driving 45 minutes to drop off my daughter. Driving another 45 minutes to get home. I. felt. fine.

This is why I started working last year, after being on disability for 8 years. Unfortunately, I bit off more than I could chew in working full-time, and I have not been able to maintain ketosis because all of my energy and effort goes into working and there's barely any left over, to the extent that I can't keep up with cleaning up my house or doing laundry, and have no social life or outside activities. And not being able to maintain a ketogenic diet, the ME has worsened significantly again, and I'm now finding that I'm unable to maintain a 40 hour work week. I've had to take sick time and vacation days because my body just can't handle it. I'm now waiting, hoping, praying to get a reduction in hours approved. My very first priority after cutting my hours from 40 to 18 will be to get back onto the keto diet so that I can improve again, and then be vigilant and prudent about pacing myself so I can maintain it.

I think maybe there's not much attention paid to it is because, frankly, it's not easy to start. I've heard people balk at having to give up grains (bread, pasta, etc), sugar, most fruit. I can't tell you how many times I've heard, even from medical professionals, "but your body NEEDS carbs for energy!" or they say they just don't think they could live without bread. That they would miss having these things, would crave them all the time.

Here's the thing though. After only a few days on keto after going through carb withdrawal (intense cravings in the evenings), I didn't crave carbs whatsoever. Didn't ever even think about food. I would have a large avocado for breakfast at around 9 am, then next thing I know, it's 3pm, and I notice I'm hungry, and think, "Hmmm, I guess I should eat." The fat is so satisfying, that not only was I not hungry, I loved what I was eating. All the butter, oil, cheese, cream, made everything I ate so richly enjoyable.

Plus, once I started getting my energy back, I was able to make all the substitutions for carbs: blueberry almond flour pancakes, chocolate fat bombs, crackers, rolls, pizza.

It was SO effective for me, that I even considered starting a business where I would deliver ketogenic meals to people who want to do the keto diet but are too ill to make the food for themselves.

 

[DoggerFisher]

@gabriella17 that's really inspiring. It's definitely the thing for me that has made the MOST difference in all the years, but I do also treat it with suspicion and think my version still needs tweaking.

 

[Lynn]

I started the ketogenic diet with intermittent fasting last November because my fasting glucose came out very high. I lost 25 lbs. Thankfully my A1C for three month average glucose tested normal last week.

Unfortunately, I had no ME/CFS symptom relief and a few other problems have cropped up since. I am still having trouble with high morning fasting glucose (dawn phenomenon), my blood pressure has risen so that I need more meds to control it, and my cholesterol is through the roof. I am very unsure what to do now.

I certainly like the weight loss benefit as in the pastnI have tried so many diets and failed. My doctor thinks thathigh dose fish oil will make a dramatic difference so I have started that.

 

[serusaert]

@@gabriella17 my keto experience is similar to yours. i wonder if a positive response to keto has to do with its reducing effect on bacterial overgrowth in the gut (SIBO) and IBS symptoms. it does also calm the CNS but that's not going to help much if the metabolic change it causes creates other metabolic issues.

i never did well on the standard hi-carb diet. i have always had digestive and bowel issues - ever since i was little - and keto is the first real relief i have had in this area.

now for an interesting observation: if i do eat carbs i do get a burst of energy and an elevation in mood as reported. but the problem is that it doesn't last and then the gut issues return, sometimes very quickly.

and like other keto-ers here, i also do a higher carb version of keto where my blood ketones, while reflective of nutritional ketosis, are generally at the lower end of the range - between 0.5 and 2.0 mmol/L. i also supplement heavily with C8 (the 8-chain saturated fat that boosts ketones due to it's quick conversion in the liver). i eat 2-3 tbs of C8 each day.

i strongly think that ME/CFS folks who are doing keto for the first time need to assess how well they do with the high salicylate content of coconut and some of the other keto-friendly foods. i say this because after about 4 mos of keto i became quite sick due to salicylate sensitivity and had to completely change my fats and foods away from anything that had even a hint of salicylate. i mainly eat animal fats. the C8 is coconut but it's not high in salicylate as it is highly refined and purified. we tend to have leaky/damaged guts, and therefore, we would tend to have issues with salicylates.

regarding supplementing with BHB, i don't take exogenous ketones as the smell and taste of the BHB salt is awful. i have no idea how anyone keeps that stuff down. it makes L-arginine taste good in comparison (which it doesn't).

the one thing i positively love about keto is that i can go for 5 hours between meals whereas before, i suffered from hypoglycemia if i didn't eat every 3 hours. so - there is another possible indication for keto: the presence of insulin and glucose issues - which i most definitely do have.

so, if you have diabetic issues and SIBO and IBS and you never did do well on carbs before, maybe keto has a better chance of improving things?

 

[gabriella17]

Hope im not being thick here, but surely Dr Myhill's diet is a paleo diet, not ketogenic. Surely the only difference between the two is that one forces you into ketosis so that you lose weight and the other doesn't.

Theres tons of stuff on PR about paleo diets.

I've been a patient of Dr M's for years and she swears by her very strict paleo diet, but it just made me feel really ill and does not work for me im afraid.

No, that's not the case at all!!! Here's what I see as the difference:

With the Paleo diet, you can avoid a lot of foods that are problematic and worsen symptoms.

With the ketogenic diet, you actually IMPROVE your symptoms not just by avoiding certain foods, but because going into ketosis actually heals the CNS!

Yes, the current trend is for using it to lose weight. But it was originally developed for treating children with epilepsy.

See: The Charlie Foundation for how it's used for children with epilepsy.

Better yet, look up the works of Dr. Perlmutter, author of Grain Brain. Here's one on Perlmutter's site that explains the science in just a few short paragraphs: Keep Yourself in Ketosis

Also, if you want a lot of the science, try the ketoscience subreddit on Reddit.com.

The whole point of the keto diet is to improve the functioning of the nervous system. Its beneficial effects on heart disease, diabetes, alzheimer's disease, parkinson's disease, not to mention obesity, is starting to revolutionize everything we thought we knew about healthy eating: the idea that low-fat is healthy is proving to be untrue.

I am living proof of what happens when you follow a ketogenic diet, and what happens when you don't: if you look for my post earlier in this thread, it tells my story.

 

[gabriella17]

Here's another thing: as most of us can attest to, the majority of doctors are pretty clueless about ME. The ones who are ME experts and trailblazers in research are our personal heroes. It's similar with medical experts and researchers who are dedicated to advancing the science of and advocating for ketogenic diets. I shudder to think of where I'd be right now (if I were here at all) were it not for their efforts.

 

[DoggerFisher]

@serusaert aren't there salicylates in practically everything?

 

[Learner1]

regarding supplementing with BHB, i don't take exogenous ketones as the smell and taste of the BHB salt is awful.

I use KetoCaNa, which has a slight orange flavor. I put it in my water bottle with some ice, Seeking Health creatine and BCAAs and drink it during my brief attempts at exercise. It seems to help.

 

[serusaert]

@serusaert aren't there salicylates in practically everything?

@DoggerFisher it certainly seems that way to me some days. but as always, it's a matter of how much salicylate. for example, radish is extremely high while rutabaga is quite low.

meat has essentially zero salicylate and that's why my keto-fats are mainly fatty meats with added lards (beef/pork leaf lard from kidney fat).

this is the excellent blog of a very salicylate-sensitive keto-er who does a low-salicylate keto to control her bipoloar and gut issues: http://www.empiri.ca/

 

[ryan31337]

@@gabriella17 my keto experience is similar to yours. i wonder if a positive response to keto has to do with its reducing effect on bacterial overgrowth in the gut (SIBO) and IBS symptoms. it does also calm the CNS but that's not going to help much if the metabolic change it causes creates other metabolic issues.
....
so, if you have diabetic issues and SIBO and IBS and you never did do well on carbs before, maybe keto has a better chance of improving things?

These were important factors in my improvement on keto. I also think that digestion/motility issues mediated by autonomic dysfunction play a bigger part in many of us without us realising - rapid gastric emptying appears to be common in POTS patients and is apparently improved by higher fat intake. At the same time dropping the carbs minimises the blood glucose disruptions that come with such dysmotility, which in my case caused massively disabling reactive hypos.

 

[anne_likes_red]

This didn't hold true for me. About 5 years ago, I got really into cold thermogenesis. I was taking ice baths almost every day for a period of a few months. There were no improvements in health, so I couldn't see a justification to continue them. The ice baths increased my tolerance to cold weather, but it was VERY short lived. Within a few weeks of stopping the ice baths, I returned to baseline. .

Interesting. Apart from illness related (endocrine factors?) playing a part I suspect there could also be genetic influences on who adapts to a cold environment more robustly? For those who do find it helps - certainly not everyone does!! - continuing ice baths shouldn't necessary to maintain brown fat - just exposing yourself to the environment with minimal insulation will support cold acclimation/non shivering thermogenesis.

Same with Ketogenic diet - seems to result in positives for some, but not all.