First time in remission with ketogenic diet

[Tammy]

You know earlier in my illness, when I went to ME-related events where I met other people, I even had to initially check myself in my head when I saw many other PwME. My conscience by default would tell me "they look totally normal and can do a lot of exertion" when I interacted with people who told me they could not work at all, yet they were active and talkative at the event and had either flown a plane or traveled a long way to get to there.

Can you imagine how hard it was for a person having ME (in their earlier more naive stage ) to fight my own initial judgments when I saw many other PwME. And I'm sure back then people had similar thoughts when they saw me. So for healthy people it's even 10x worse when they see us. They just think you are taking advantage and lazy.

Great observation.

 

[outdamnspot]

@leokitten - do you know anything about d-ribose and keto? I've been taking d-ribose for 11 years now, taking close to 15 grams a day, which equals 15 carbs! When I first started the d-ribose I had a noticeable increase in energy. I've tried cutting back a few times but my energy seems to decline so I just keep taking it. I am realizing that I will have to stop the ribose or only take a tiny bit. Do you know of anyone who faced this issue and how they did with cutting back on or cutting d-ribose out altogether?

I'm going to try this diet regardless but just wanted to see if you knew anything about this. And if you don't I'll do a separate post and see if anyone else does.

BTW, I ordered the meter etc. early this a.m. and it's on its way already! I plan to buckle down in the next couple of days and download the app you recommended and start figuring out what I can eat and how much, etc. It's a big project! And it's all thanks to you (mostly) and my son a little too

Hi Mary just wondering if you ever found an answer re: ribose and keto? I'm very low carb (about 3g a day) and added in ribose today (5g in coffee). I seemed to tolerate it okay but have read some people concerned it can knock you out of ketosis; I wasn't sure if that's due to carbs or another mechanism.

 

[Mary]

Hi Mary just wondering if you ever found an answer re: ribose and keto? I'm very low carb (about 3g a day) and added in ribose today (5g in coffee). I seemed to tolerate it okay but have read some people concerned it can knock you out of ketosis; I wasn't sure if that's due to carbs or another mechanism.

Sorry, I never did get an answer to this. I would think that d-ribose would act like any other carb. Did you get a ketone/glucose meter as leokitten recommended? I think that might be the best way to find out how d-ribose affects you. You are so very low carb, I would guess the 5 g of d-ribose would be okay.

I had to stop the keto diet - after 4 or 5 days. I won't go into all the details (I did a thread on this) but I think it depleted my branched chain amino acids (and possibly other aminos) - I started cashing easier, less stamina and took longer to recover.

 

[leokitten]

@leokitten - do you know anything about d-ribose and keto? I've been taking d-ribose for 11 years now, taking close to 15 grams a day, which equals 15 carbs! When I first started the d-ribose I had a noticeable increase in energy. I've tried cutting back a few times but my energy seems to decline so I just keep taking it. I am realizing that I will have to stop the ribose or only take a tiny bit. Do you know of anyone who faced this issue and how they did with cutting back on or cutting d-ribose out altogether?

I'm going to try this diet regardless but just wanted to see if you knew anything about this. And if you don't I'll do a separate post and see if anyone else does.

Sorry @Mary that I just saw this now, sometimes it doesn’t give me an alert. I did d-ribose a long time ago, long before keto and I wonder if I should try it again. The first time it didn’t really help with PEM. Maybe with keto it will have a better effect. Keto doesn’t prevent crashes or PEM, just increases the threshold.

 

[sb4]

@leokitten The benefits still holding up?

I am back in the keto diet for about 2 weeks now. Gastroparesis has only been an issue some days however my appetite is suppressed so I am eating like 1000kcals a day so it's fine for now as I have some weight to lose.

My post (carb) meal symptoms have mostly gone meaning my symptoms stay at baseline for most of the day which is very good for me.

 

[leokitten]

@leokitten The benefits still holding up?

I am back in the keto diet for about 2 weeks now. Gastroparesis has only been an issue some days however my appetite is suppressed so I am eating like 1000kcals a day so it's fine for now as I have some weight to lose.

My post (carb) meal symptoms have mostly gone meaning my symptoms stay at baseline for most of the day which is very good for me.

That’s great, I’m happy for you as I know you were having some pretty serious issues before.

The benefits for me are still really good. Not as amazing of an overall improvement as the first two months when I started, but when it settled it’s been sustained at the same level.

I won’t ever go off the diet because in a few days of eating healthy normal carbs my illness worsens back to the way it was before I started and I go back to being bedridden and housebound.

 

[rel8ted]

I won’t ever go off the diet because in a few days of eating healthy normal carbs my illness worsens back to the way it was before I started and I go back to being bedridden and housebound.

I agree. I am still mostly housebound, although with a lot of help, I can get out occasionally. I just don;t seem to tolerate carbs and eating keto relieves my gut issues.It's a small improvement, but at least it is something. I now also have the added challenge of alpha gal allergy thrown in the mix, so I can no longer consume mammalian meats or their by products, which are in everything. It is proving more difficult than going gluten free!

 

[Hope4]

@leokitten I haven't been able to take the d-ribose because the ones I've found are made from corn, or the excipients are intolerable. I have recently started taking BCAA (branch chain amino acids), due to someone here at PR recommending them. I find they help me feel stronger, more alert, and more awake. I also take CoQ10, L-Carnitine, and Acetyl-l-Carnitine, and iodine. Spirulina helps me feel stronger and more physically grounded/stable, too.

I don't know if that is of any help to you.

I, too, find supplements and carb counts a delicate balance.

 

[Wayne]

I have recently started taking BCAA (branch chain amino acids), due to someone here at PR recommending them. I find they help me feel stronger, more alert, and more awake.

Hi @Hope4 -- I started BCAAs a few weeks ago myself, and have had similar results. I consider it one of my more valuable supplements. Here's the brand I bought:

Nutricost BCAA Powder 2:1:1 90 Servings - High Quality Branched Chain Amino Acids

 

[godlovesatrier]

Hi there,

I am just about to start this diet today, primarily to loose some weight although recently I found I was unable to tolerate carbs at all, whereas 5 weeks later I can tolerate them again. I wondered if anyone could comment on there immune systems strength while being on Keto? The one thing I worry about is getting sick on these diets because I got extremely ill on Paleo I think it must have lowered my immune defences massively at the time. That or I was just extremely unlucky. My nutritionist from LCON believed that I was simply not getting enough fat on my prior paleo diet as I was super hungry all the time. So this time I've increased the fat but I've had to add some dairy options in as well, which I am assuming is going to increase my symptoms and inflmation.

Any thoughts on immune strength much appreciated, especially for those of you who regularly come into contact with strangers or family who might have a cold etc.

 

[Rufous McKinney]

You know earlier in my illness, when I went to ME-related events where I met other people, I even had to initially check myself in my head when I saw many other PwME. My conscience by default would tell me "they look totally normal and can do a lot of exertion" when I interacted with people who told me they could not work at all, yet they were active and talkative at the event and had either flown a plane or traveled a long way to get to there.

Well, I think that when I come here. I have very intense cognitive dysfunction..and I observe here people writing immense missives. And presumably reading all this stuff, science, etc.

You all very lucky you can still do all that. Mental exertion remains really intense here. I was able to write maybe three whole paragraphs- months ago during my "60 days" of doing VIRTUALLY NOTHING except maybe a bit of reading. Now- it appears I'm done commenting for today.

 

[Lieselotte]

@godlovesatrier it could be possible that you weren't getting enough fat on the paleo diet.
I remember when I started paleo I was ravenously hungry all the time. It took time for my body to get used burning a new mix of fuel. Eating all the fat I could helped: chicken with all the skin, lots of bacon (!), oil on veggies, almond butter on fruit, glass of coconut milk...

 

[sb4]

So I made yet another attempt at getting ketosis to work. I lasted 1.5 weeks. I was taking urine ketones in this time and they where measuring between 4-8mmol/L.

For the first 5 or so days heart problems where significantly increased. I speculated that this could be due to adrenal problems since adrenals need carbs to work well and that I suspect my body is compensating for POTS with increased adrenaline. So I added Vitamin C and start to feel a bit better.

Then about 10 days in I figured what if this ketosis is causing a mild acidosis type problem in my kidneys / blood, perhaps something to do with the lactic acid I experience. I remembered a thread on here where people found baking soda helped. So I decided to add some potassium citrate to "mop up" some H+.

Then that night I went to pee and suddenly got a very sharp pain in my dick. It was present all night and I would only feel it if I moved too much. I immediately thought could this be a kidney stone. So I started reading a bit. I found this article which was interesting.

My diet up until that point had been Spinach, Eggs x6, tallow 100g, Cheese 100g, and a little meat. Well spinach is of course high Oxalate, Cheese is high Calcium and my diet is otherwise low in Magnesium, and ketosis produces a lot of Uric Acid. Also I have read contriversial articles saying that Vit C increases Oxalate through conversion to it when been broken down. So my Kidneys where seeing high Oxalate, Calcium, and Uric acid which seems to be very good conditions for making kidney stones.

Anyway I peed out the stone the next day and confirmed that it was. Thing is, I though kidney stones would take years to make. Does anyone know if they can be generated rapidly? Anyway this has scared me enough to abandon this diet for now.

As a side note if you want to get high fat without dairy I have found mixing with plenty of eggs is a good way. Adding plain fat to a meal in high amounts makes me gip. I suspect that the emulsifiying properties of eggs and indeed the choline (which helps proccess fats) make your body more likely to accept fat packaged in this way.

 

[SherDa]

https://www.cell.com/cell/abstract/S0092-8674(18)30520-8

Very interesting! Thanks for sharing.

I had a lot of concerns that a keto diet would be devastating to the microbiome. I'm so surprised that it enhances Akkermansia populations.

 

[Wayne]

So my Kidneys where seeing high Oxalate, Calcium, and Uric acid which seems to be very good conditions for making kidney stones.

Hi @sb4 -- When I read your comments about kidney stones, I thought I recalled that nettles is supposed to be especially good for supporting kidney function. I did a quick online search, and came up with the following article:

A HEALING HERB FOR YOUR KIDNEYS

Here's a quick snippet from the article:

Nettles are amazing little things for a whole host of different ailments. They are a natural, effective treatment for pain relief (used for arthritis, muscle aches, and insect bites), inflammation (highly effective in the treatment of gout and skin conditions), to improve immunity, anemia, hay fever, and to lower blood sugar or blood pressure.​

​

However, the renal system seems to gain the greatest benefits of nettles!​

​

As a natural detoxifier, blood purifier, and diuretic, nettles work to remove impurities such as bacteria, calcium crystal deposits, grit and kidney stones from your kidneys, bladder, and urinary tract. This helps to prevent formation of kidney stones and the discomfort of urinary tract infections (UTI). The removal of excess water in the extremities (hands, feet, and face) is a particular benefit to kidney patients who may be unable to accomplish this task automatically.​

 

[sb4]

Thanks @Wayne I might look into that at some point. At the moment I am trying to reset my body to baseline after this recent experiment so no supplements for me. Though if I do get another stone I will look into nettles.

 

[Gondwanaland]

Very interesting! Thanks for sharing.

I had a lot of concerns that a keto diet would be devastating to the microbiome. I'm so surprised that it enhances Akkermansia populations.

A high carb diet is probably much more harmful

 

[Frunobulax]

My diet up until that point had been Spinach, Eggs x6, tallow 100g, Cheese 100g, and a little meat. Well spinach is of course high Oxalate, Cheese is high Calcium and my diet is otherwise low in Magnesium, and ketosis produces a lot of Uric Acid. Also I have read contriversial articles saying that Vit C increases Oxalate through conversion to it when been broken down. So my Kidneys where seeing high Oxalate, Calcium, and Uric acid which seems to be very good conditions for making kidney stones.

From my own experience I'd recommend avoiding oxalates on a keto diet. No almonds and spinach for me. Yes, magnesium citrate and calcium can help, but you'll need them to dissolve existing oxalate crystals in your body.

I seriously doubt that vitamin C increases oxalates, I haven't heard of a single study that vitamin C contributes towards oxalate kidney stones. I think it increases oxalate elimination but not oxalates themselves so you'll measure more oxalate in your urine with vitamin C.

Anyway I peed out the stone the next day and confirmed that it was. Thing is, I though kidney stones would take years to make. Does anyone know if they can be generated rapidly?

No. Keto diet can dislodge pre-existing kidney stones, as they often shrink in ketosis.
https://bozmd.com/keto-diet-and-kidney-stones/

 

[ebethc]

I've been using the Ketogenic diet for 10 months now as it leaves me in a much better state of health than Paleo, less PEM, no air hunger, better coordination and balance, about 10% more energy and mental clarity. But unfortunately it has not been such a miracle cure for me and I have been seeking ways to improve its efficacy such as using a Calcium Pyruvate supplement to maybe increase Pyruvate.

did you ever try Calcium Pyruvate, and, if so, what were the effects?

I'm a little afraid to mess w pyruvate myself
https://www.healthline.com/nutrition/calcium-pyruvate#3

--
@leokitten my 2nd, 3rd and 4th pyruvate questions are for you:

2nd, if pyruvate helps the breakdown of fat, and CFS'ers have pyruvate dysfunction, then why are Keto diets helpful? wouldn't eating more fat collide w pyruvate dysfunction to create a bigger mess? *

3rd, is there a test to determine PDH or pyruvate dysfunction?

4th, is pyruvate linked to collagen synthesis or breakdown, etc., at all? or, is that an entirely different CFS issue?


BTW, @leokitten , Glad to see your post!
I've been experimenting w keto the past year, and have found it helpful... i got fed up w the lack of direction and results w CFS research so I started reading about self-care solutions for diseases that seemed adjacent to CFS and have more funding... e.g., multiple sclerosis... Keto is the obvious solution for neuro-immune illnesses when it comes to self-care, but it still takes a lot of n=1 experimentation, too... unfortunately, at this point in my illness, I've lost a lot, am totally broke, and keto is expensive. (pasta is $0.50 / day, but that's where I am sometimes, financially..)...

a couple of my own discoveries:
Cod Liver Oil: I've found cod liver oil helpful, partly b/c healthy fats and vitamin D, but it's somehow way more helpful than just taking fish oil or vitamin D alone... CLO provides natural forms of fat soluble vitamins in the right ratios, so I'm wondering if fat metabolism dysfunction requires that I need MORE fat soluble vitamins?? I'm def low on vitamin D all the time and have been supplementing off/on for years, but CLO is better.

caprylic acid/C8 (an MCT derived from coconut oil): I've found supplementing w caprylic acid/C8 amazingly helpful, and highly recommend trying it... but I can never afford it... (Brain Octane by Bulletproof, expeller pressed - no hexane, but there are other brands) If I could afford it, I'd take it every day in my coffee (2-3T / day winds up being $40-50 per month..too much).. whereas coconut oil is $5 @ trader joe's... It's a cheap substitute in more ways than one.. It's very heavy, vs caprylic acid (C8) which is easier to digest and lighter... My body and brain like the C8/caprylic acid WAY more., and my brain fog drastically improve and my aches/pains are fewer.... I might try MCT oil next (which is usually half C8), which would be ~$30/month, or a cheaper brand of C8 if there's one that's decent quality...

 

[leokitten]

I wanted to post my long-term update on the ketogenic diet which I wrote back in March 1st 2019 on S4ME and forgot to here:

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 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.

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 the amount you can exert before getting PEM or crash, but it doesn’t stop it, and it’s a really difficult diet to continue to do day in and day out for a long time. If you aren’t keeping strict track of the macros, aren’t measuring blood ketones to make sure you are consistently in therapeutic ketosis, and making sure you consistently eat enough calories and 75-80% must be fat (which is the most exhausting part) then you won’t be in therapeutic ketosis enough to have enough of an effect. Also eating such high amounts of fat could be damaging your cardiovascular health and the scientific community really doesn’t know yet what effects ketogenic diets have on cardiovascular health long term.