Bad experience with keto

[Ema]

Realistically though I don't think 4 days is enough for most people to keto-adapt.

Experts in the field suggest it can take up to 6 months for someone with metabolic problems to fully adapt. This was my experience as well. The 3-5 days business is for healthy people who still have some degree of metabolic flexibility.

And that's precisely why the ketogenic diet could be deadly bad for some of us, while the Holy Grail to others.

I don't understand how metabolic flexibility could ever be "deadly bad" for anyone.

 

[JaimeS]

I wonder.

I do really well on fat, protein, and VERY few carbs. But I've heard other patients in whom low sugar made them feel miserable.

First, let me say that I agree that the first few days are always hard if you drop your carbs significantly. I didn't ever get the "keto flu" but was just totally exhausted. More like PEM, though I guess that may be why they call it "flu-like symptoms".

I did a little bit of study on metabolomics of infection. Early in infection, your body needs glucose & carbs; it's only in late stages when your body really wants more fats and proteins if it'll recover.

Perhaps some people are still in 'early/active infection' mode and need carbs to keep fighting, whereas the rest of us have metabolic demand that more matches late phase.

 

[Mary]

Realistically though I don't think 4 days is enough for most people to keto-adapt. In my experience that was actually about the time of peak keto flu symptoms,

I totally agree that wasn't enough time to keto-adapt. I had 2 different kinds of fatigue, however - I'm pretty sure the first was from the "keto flu" - it got pretty severe, but then got a little better, and I think I could have stuck it out it, if it was just that fatigue and fuzziness. But what I couldn't handle was crashing so much more quickly, which is way different than just being tired. And then taking twice as long to recover from crashing. when I'm crashed I'm completely immobile. I just couldn't face the possibility of being able to do so much less than I can now (which is still quite limited), and then taking twice as long to recover.

However, as I wrote above, I think there's a very good possibility that the diet seriously depleted my BCAAs, which were the things which cut my PEM recovery time in half 4 years ago, ,and have taken ever since.

I'm not discounting the possibility you have another deficiency making the transition difficult though - perhaps you could attempt a more gradual initiation?

Possibly - maybe after the holidays when I'm feeling a bit adventurous, I might try again, but this time doubling up (at least!) on my BCCAs plus using the MCT oil, or other things that have been suggested above.

What benefits have you had from keto?

 

[YippeeKi YOW !!]

I don't understand how metabolic flexibility could ever be "deadly bad" for anyone.

@Ema
I wasn’t contesting “metabolic flexibility” …. I was addressing the likelihood that certain diet restrictions might be contraindicated in the presence of adverse attenuating factors. It metabolic flexibility was an all-powerful overriding factor, obesity and other negative metabolic expressions would be non-existent.

 

[jesse's mom]

I am glad I read this thread. I already have eliminated most simple carbs and sugars from my diet. I do have to go somewhat with what my husband cooks. I am aggressively resting and am doing better and finding my pace.

I am a real novice to all this supplementing, and am taking NAC supplements. This thread has not inspired me to try the Keto diet... yet.
It has finally convinced me to get some BCAAs and would like to know how much per day is a good place to start. @Mary

My new DO had me do tons of bloodwork in August and wanted me to take a statin. I did not tolerate the statin at all. the myalgia pain was on fire for weeks. My bad cholesterol is high but my good cholesterol is fine. I added some real butter and sweet potatoes to my diet a few weeks ago and and feel even better.

I even had a really hard time with tolerating VitD and @pamojja was very helpful to me at building that up over time. I have tolerated my door open and the sunlight coming in the room on pretty days!

Thank you all for participating on this board and sharing your experience! Also thanks for educating a novice!

 

[ryan31337]

What benefits have you had from keto?

Hi @Mary,

Keto adaptation took me from bed/couch bound and very symptomatic daily to being able to leave the house on short trips and manage a few hours of desk work a day without any issues. Naturally my threshold to trigger PEM is better, but what I also really notice on low-carb is that any PEM I do now suffer is greatly reduced in severity and length - it lasts days not weeks, my cognition is slowed not stopped, my OI flares are objectively reduced, I feel like I have a 'cold' not the 'flu' etc. Basically a shift to milder CFS.

More has come to light very recently though re my diagnoses that probably sets me apart from most and might explain why low carb has had such a large effect on me. The way I see it, I had a constellation of issues that all respond well to low-carb:

- Inflammatory arthritis condition: still waiting on the exact diagnosis but I expect it to be a seronegative spondyloarthropathy. These inflammatory conditions often respond well to starch-free diet, which keto obviously is.

- Rapid gastric emptying: probably linked to diagnosed SFN & POTS. Massive symptomatic improvement here, high fat slows the dumping and low carb reduces the spikes, no reactive hypo 4x a day.

- Small Intestinal Bacterial Overgrowth (SIBO): starving the bacteria of carbs stopped the immediate postprandial symptoms of pain/bloating etc. but I think probably also improved gut health and reduced histamine production etc.

Ryan

 

[WinterWren]

I wonder.

I do really well on fat, protein, and VERY few carbs. But I've heard other patients in whom low sugar made them feel miserable.

First, let me say that I agree that the first few days are always hard if you drop your carbs significantly. I didn't ever get the "keto flu" but was just totally exhausted. More like PEM, though I guess that may be why they call it "flu-like symptoms".

I did a little bit of study on metabolomics of infection. Early in infection, your body needs glucose & carbs; it's only in late stages when your body really wants more fats and proteins if it'll recover.

Perhaps some people are still in 'early/active infection' mode and need carbs to keep fighting, whereas the rest of us have metabolic demand that more matches late phase.

I also wonder about this change over time as ME progresses. That's an interesting thought. Years ago (near the beginning of my onset) I tried a month of low sugar Paleo. I pushed through a lot of bad symptoms because of all the talk about detox and letting your body adjust.

I came down with all sorts of infections in that month (skin, dental, eye) that seemed out of nowhere. I had much more intense brain fog episodes, possible hypoglycemia symptoms, and after I was done with the diet my ME symptoms were worse permanently.

I seemed to have trouble with the amount of fat but I really don't know (I think this because of consistently getting an extremely dry mouth after high fat meals, and MCT oil giving me peripheral neuropathy "attacks").

This is part of the reason I think we have to be careful about our individual differences in metabolism. But I've just started another low carb diet, with a different approach, and so far so good.

I thought that lipid metabolism was also found to be compromised to some degree in pwME but I forget what research that's from? I'll have to dig through my notes.

 

[Mary]

Hi @jesse's mom - I can tell you what I take, which has helped my PEM recovery time - 4000 - 5000 mg. of BCAAs a day. I take it in two doses, on an empty stomach - 1/2 at least half an hour before breakfast, and the other 1/2 late morning, at least half an hour before lunch, I think it would probably be okay to take BCAAs in the afternoon, but I have read that they might interfere with sleep if taken late in the day or at night. I was taking 4000 mg for a few years and just recently went up to 5000. @ljimbo423 is doing well on 15,000 mg a day, that's a rather high dose and we're all different. What I'm taking is a pretty average dose. I am going to be increasing it gradually just to see if I can make even more improvement with it.

I've been taking this brand for the last few years and do well with it. It's 8 capsules a day for 4000 mg. but recently increased to 10 caps a day.

But I recently bought this from Bulk Supplements and am doing okay with it. I've read that BCAAs taste horrible but I've been adding it to low-sodium V8 and don't really taste it. It doesn't dissolve very well at all, but that doesn't matter, just as long as I can get it down! NOTE: I think almost all (if not all) Bulk Supplement products are available on Amazon for the same price so with Amazon Prime I get free shipping on Bulk Supplement products.

This thread has more info on BCAAs.

 

[Mary]

Hi @ryan31337 - thanks so much for all the info! And I'm very glad to hear you've had such major improvement with keto!

 

[Wishful]

I gave coconut oil a try, based on the 'it helped me' stories here. It made me feel much worse. So, like a keto diet, it might be good for some people, and terrible for others. Maybe optimum diets for ME are as individualistic as people's microbiome.

FWIW, I did no worse on a pure carb diet than on a healthy mixed diet.

 

[jesse's mom]

Hi @jesse's mom - I can tell you what I take, which has helped my PEM recovery time - 4000 - 5000 mg. of BCAAs a day. I take it in two doses, on an empty stomach - 1/2 at least half an hour before breakfast, and the other 1/2 late morning, at least half an hour before lunch, I think it would probably be okay to take BCAAs in the afternoon, but I have read that they might interfere with sleep if taken late in the day or at night. I was taking 4000 mg for a few years and just recently went up to 5000. @ljimbo423 is doing well on 15,000 mg a day, that's a rather high dose and we're all different. What I'm taking is a pretty average dose. I am going to be increasing it gradually just to see if I can make even more improvement with it.

I've been taking this brand for the last few years and do well with it. It's 8 capsules a day for 4000 mg. but recently increased to 10 caps a day.

But I recently bought this from Bulk Supplements and am doing okay with it. I've read that BCAAs taste horrible but I've been adding it to low-sodium V8 and don't really taste it. It doesn't dissolve very well at all, but that doesn't matter, just as long as I can get it down! NOTE: I think almost all (if not all) Bulk Supplement products are available on Amazon for the same price so with Amazon Prime I get free shipping on Bulk Supplement products.

This thread has more info on BCAAs.

Thank you!

 

[ljimbo423]

@ljimbo423 is doing well on 15,000 mg a day, that's a rather high dose and we're all different. I am going to be increasing it gradually just to see if I can make even more improvement with it.

I just bumped my dose up to 16 grams/day 3 days ago, to find my optimal dose for increased energy, without it interfering with my sleep. So far so good!

It hasn't interfered with my sleep at all and I feel a definite increase in energy.

I agree that we all respond to supplements differently, so it's best to start at a very low dose and go from there. I still haven't had any side effects from them, except for it being hard to sleep at 20 grams/day.

I think it would probably be okay to take BCAAs in the afternoon, but I have read that they might interfere with sleep if taken late in the day or at night.

I take my last dose at about 1:30 in the afternoon, just to make sure it don't interfere with my sleep. I usually go to sleep about 11:30 pm.

 

[Mary]

@ljimbo423 - I'm pretty sure you've posted this before,, but you could provide the brand name of the BCAAs you take? And I'm really glad to hear you are still doing so well! I am increasing my dose slowly. I think I got derailed by keto but am back on track.

 

[Mary]

I gave coconut oil a try, based on the 'it helped me' stories here. It made me feel much worse.

I took virgin coconut oil some 14 years ago for candida - it's a very powerful antifungal and I had a very strong hexheimer reaction. I had to go very slow with it, it took 11 days but was very effective. It also has antiviral properties (high in lauric acid which converts to monolaurin which is antiviral).

So I'm wondering if perhaps you may have had a herxheimer reaction of some sort with the coconut oil. Or it just may not have agreed with you. We are all so different.

 

[Wishful]

There's no convenient way to know why the coconut oil--or anything else--makes my symptoms worse. It would be different if I knew that a treatment would work after 'x days' of feeling lousier, but I don't want to take something that makes me feel lousier, for an unknown length of time, just because one or two other people say that it works for them. Yes, there's always that nagging little thought that 'maybe it would have worked if I'd just taken it for another day or two', but we have to go by our best judgement, and that coconut oil didn't provide any improvements along with the worsening of symptoms, so I'm not anxious to try it again for longer.

 

[ljimbo423]

@ljimbo423 - I'm pretty sure you've posted this before,, but you could provide the brand name of the BCAAs you take? And I'm really glad to hear you are still doing so well! I am increasing my dose slowly. I think I got derailed by keto but am back on track.

Thanks Mary! I'm glad your back on track. I go off track every once and a while and it's no fun!

I hope you continue to get even better benefits at higher doses. Yes, this is the brand I use. It is unflavored and doesn't have anything else added.

They do have flavored ones on the same page though. To those that don't already know. Plain BCAA's taste bitter. Most people put them in some kind of drink.

Although I just put a 4 gram scoop of the unflavored one in my mouth and wash it down with a drink, sweetened with stevia.

 

[YippeeKi YOW !!]

@jesse's mom

Here's the very short version re BCAAs.

There’s a boatload of info on BCAAs and other things that help (like DMG (dimethylglycine) and D-ribose among others) on Mary’s thread, so when you’re up to it, it’s really worthwhile reading.

BCAAs need to be taken on an empty stomach (at least 30-45 minutes before food, or an hour and a half after), and with anything that doesn't contain amino acids or protein. From what I've heard, they taste truly foul if you use the bulk powder form, but are tasteless in capsules.

In the meantime, the very short version of what @Mary said:

“I take 4 capsules at least half an hour before breakfast and 4 more before lunch, a total of 8 a day altogether for a total of 4,000 mg. a day.”

“Start with a quarter or half of a daily dose (daily dose being 4,000 - 5,000 mg.) and then work up to a full dose over a week or 2, which generally is a good way to go. Though with the BCAAs, I took a full dose from the beginning and had no problems, though we all react differently to supplements.”

“...it used to be that doing one thing too many - e.g., going to the library after grocery shopping would land me in bed for 2 to 3 days. Now it's one. So I take them all the time. I don't want to go back to how I was.”

Here’s a link to BCAAs from NutraBio, the best, purest source I've found for almost every amino acid and a lot of other things. Third-party certified, full disclosure on sourcing and purity.

https://www.nutrabio.com/category/bcaa2500/

And here's the link to the crammed-full-of-highly-useful-information thread from @Mary

https://forums.phoenixrising.me/index.php?threads/bcaas-reducing-pem.34719/page-3

Hope this helps .... it comes from the heart!!!

 

[pamojja]

BCAAs need to be taken on an empty stomach (at least 30-45 minutes before food, or an hour and a half after), and with anything that doesn't contain amino acids or protein.

Amino-acid generally compete for absorption and are therefore recommended to take separate. The competition isn't however anywhere from complete. Otherwise since ancient times we wouldn't have survived from natural proteins all mixed.

I do find a BCAA deficiency on a ketogenic diet highly unlikely, since so many low carb foods contain a lot:

When I calculated my BCAA intake from food alone years ago on a pescarian diet (including fish, eggs and cheese) it turned out at 10.4 g per day.

 

[YippeeKi YOW !!]

Amino-acid generally compete for absorption and are therefore recommended to take separate. The competition isn't however anywhere from complete. Otherwise since ancient times we wouldn't have survived from natural proteins all mixed.

I do find a BCAA deficiency on a ketogenic diet highly unlikely, since so many low carb foods contain a lot:

@pamojja

I’m not clear as to where I'm missing the point, but here’s what I think your post is getting at (sorry, brain dead from lack of sleep).

Yes, usually all, or most, amino acids occur in protein-rich foods, and are all beneficial to the body, which uses them as needed to make proteins, effect repairs and maintenance, and conduct its brainy-ish business, and stores any excess as fat.

But just as tryptophan, when taken to induce sleep, needs to be taken in the absence of other amino acids in order to avoid competition with those other amino acids and be effective as a sleep aid (the brain doesn’t differentiate, building blocks are building blocks as far as it’s concerned and it just grabs whatever comes thru its door first), BCAAs will function best for increased energy and for the alleviation of prolonged PEMS episodes when taken away from other, competing and diluting, amino acids.

The difference between your intake of BCAAs as part of a complete protein array of amino acids lies in its utilization, not just it’s presence. Leucine, isoleucine, and valine are present as part of a complete protein and will have a greater or lesser effect, based on what makes it to the factory first.

Take a look at the @Mary thread, where BCAAs and their function are clearly explained, much better than I can do today with my poor, battered brain .

If I don't get back to you right away with any follow-up, it's because at some point I'm going to have to take a little lie down, I've been up for nearly a full day with almost no sleep and I'm finally beat enough to maybe get some shut-eye. Ha. Famous last words.

 

[Wishful]

But just as tryptophan, when taken to induce sleep, needs to be taken in the [I]absence[/I] of other amino acids in order to avoid competition with those other amino acids and be effective as a sleep aid (the brain doesn’t differentiate, building blocks are building blocks as far as it’s concerned and it just grabs whatever comes thru its door first), BCAAs will function best for increased energy and for the alleviation of prolonged PEMS episodes when taken [I]away[/I] from other, competing and diluting, amino acids.

There is an order of preference for amino acids crossing the BBB. From what I read, tryptophan is the last to board the train, so to speak. Take some BCAAs and you won't be getting much TRP crossing the BBB for a while. I assume there are other preferences, but I haven't come across a list of priorities. I just wanted to block TRP transport into my brain, and BCAAs seemed to do that quite well.

Maybe some people have different amino acid transport priorities than other people, so you might have to experiment. If you really want a specific amino acid transported, it's probably best to take it alone.

@Mary, have you experimented with the BCAAs separately? Maybe you only need to take one of them, and maybe it would be more effective alone. Just a possibility.