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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Messages
23
I don't understand the mechanisms, but I don't agree with carbs anymore. My body doesn't seem to know how to utilise it properly anymore. I gain weight rapidly and crash a lot when I eat carbs with each meal every day. However, the first few days on Keto is bad. Then I start to have more energy and lose weight rapidly. Then I get exhausted and begin to crash again and need carbs for energy upkeep. It's a vicious cycle. I seem to find a better balance with a small portion of carbs a day, like 1 serving of rice or a slice of bread,
I do all my carbs in the morning unless I’m doing an easy hike, never for dinner.
I’m also metabolic syndrome Comorbid, and that a.m. routine can do wonders on my blood glucose.
 

livinglighter

Senior Member
Messages
379
I do all my carbs in the morning unless I’m doing an easy hike, never for dinner.
I’m also metabolic syndrome Comorbid, and that a.m. routine can do wonders on my blood glucose.

I may try that if I return to carb consumption. At the moment I'm doing no carbs.
 

nerd

Senior Member
Messages
863
Pancreas pain can be on the right where the ‘head’ is located

I see. Though, they also mention that gallstones can cause this. I still have issues with the gallbladder and potentially pancreas as well since it doesn't release insulin despite a glycaemic trigger. Some blogs suggest that this is just an adaptation phase from the unhealthy carb diet. I'll try to get an ultrasound next week to see if some gallstones are involved or not.

I don't understand the mechanisms, but I don't agree with carbs anymore. My body doesn't seem to know how to utilise it properly anymore. I gain weight rapidly and crash a lot when I eat carbs with each meal every day. However, the first few days on Keto is bad. Then I start to have more energy and lose weight rapidly. Then I get exhausted and begin to crash again and need carbs for energy upkeep. It's a vicious cycle. I seem to find a better balance with a small portion of carbs a day, like 1 serving of rice or a slice of bread,

Maybe you're hyperinsulinaemic as well. I had carbs in my diet pre-keto, but no sugars. When the glycaemic triggers disappear, and you're used to a hyperinsulinaemic diet, you'll experience relative hypoglycemia by the underexpression of insulin at the cellular level. The keto flu can last up to a few days until the liver goes into ketogenesis. Even then, you can still experience symptoms from the relative hypoglycemia. You actually don't need carbs when you have sufficient proteins because proteins can be converted into carbs when you have too much protein. This conversion happens in a more nuanced way. Have you ever measured your blood glucose during the crashes when you need carbs?
 

livinglighter

Senior Member
Messages
379
I see. Though, they also mention that gallstones can cause this. I still have issues with the gallbladder and potentially pancreas as well since it doesn't release insulin despite a glycaemic trigger. Some blogs suggest that this is just an adaptation phase from the unhealthy carb diet. I'll try to get an ultrasound next week to see if some gallstones are involved or not.



Maybe you're hyperinsulinaemic as well. I had carbs in my diet pre-keto, but no sugars. When the glycaemic triggers disappear, and you're used to a hyperinsulinaemic diet, you'll experience relative hypoglycemia by the underexpression of insulin at the cellular level. The keto flu can last up to a few days until the liver goes into ketogenesis. Even then, you can still experience symptoms from the relative hypoglycemia. You actually don't need carbs when you have sufficient proteins because proteins can be converted into carbs when you have too much protein. This conversion happens in a more nuanced way. Have you ever measured your blood glucose during the crashes when you need carbs?

Thanks @nerd. I haven't measured my blood glucose during the crashes when I need carbs. But it has been going on for so long now that I know there is an issue with carbs. I gain fat too quickly with them and I lose fat just as fast without them. It's just hard to stay off them as like you mention I probably experience hypoglycemia for some time before I give in to carbs again. I use chromium now though it helps reduce the swings and reliance on carbs. I had a A1C test recently, they said the results were all fine. I plan to see an endocrinologist who treats ME/CFS patients with this problem.
 
Messages
23
I see. Though, they also mention that gallstones can cause this. I still have issues with the gallbladder and potentially pancreas as well since it doesn't release insulin despite a glycaemic trigger. Some blogs suggest that this is just an adaptation phase from the unhealthy carb diet. I'll try to get an ultrasound next week to see if some gallstones are involved or not.



Maybe you're hyperinsulinaemic as well. I had carbs in my diet pre-keto, but no sugars. When the glycaemic triggers disappear, and you're used to a hyperinsulinaemic diet, you'll experience relative hypoglycemia by the underexpression of insulin at the cellular level. The keto flu can last up to a few days until the liver goes into ketogenesis. Even then, you can still experience symptoms from the relative hypoglycemia. You actually don't need carbs when you have sufficient proteins because proteins can be converted into carbs when you have too much protein. This conversion happens in a more nuanced way. Have you ever measured your blood glucose during the crashes when you need carbs?
I pushed through that ‘transition phase’ for six weeks. It totally ruined my normal summer improvement season for the year. Pancreatic pain has some association with fat consumption.
 

Lalia

Senior Member
Messages
127
Location
Australia
It's also possible that there is a blockage in the citric acid cycle and thiamine deficiency would be a typical trigger for this. The normally increased glycolysis in CFS/ME will increase the demand for thiamine anyway. Thiamine is an essential cofactor of α-ketoglutarate dehydrogenase, which catalyzes α-ketoglutarate to Succinyl-CoA, and pyruvate dehydrogenase, which breaks down pyruvate to Acetyl-CoA, which ensures that glucose metabolites are integrated into the citric acid cycle. In the case of thiamine deficiency, BCAAs would be the only way to refuel these two CoAs. And without these CoAs, neither glucose nor ketones can fuel the energy metabolism.

Hi @nerd thank you for taking the time to share all of this great information. I’m investigating thiamine deficiency at the moment and read the above paragraph with interest. Are you saying supplementing with thiamine itself won’t restore those two CoAs? So even if you get your thiamine level up, you still need to take BCAAs to normalize the cycle? Would you mind expanding on this further, just trying to wrap my head around it. Many thanks again for sharing your knowledge 😊
 

nerd

Senior Member
Messages
863
Are you saying supplementing with thiamine itself won’t restore those two CoAs? So even if you get your thiamine level up, you still need to take BCAAs to normalize the cycle?

Eventually, thiamine should get these enzyme activities functional again for the most part. But this takes time. BCAAs can close the gap.
 

Murph

:)
Messages
1,794
I'm planning to start keto soon. I'm pretty nervous as frankly, I notice big crashes after I try to do too much (e.g. walk the dog (<- pictured )) without sufficient carbs. I also had a hypoglycaemic episode last year that was worrying. I got low blood sugar and became quite disoriented while out in public.

But if I zoom the lens out a bit, I've also noticed that I have overall better health at times I'm eating fewer carbs. I *think* I crash a bit less on a low carb diet.

I'm nervous I'll crash in the first few days of keto, I guess I just need to take it easy while I try to adapt!
 

Murph

:)
Messages
1,794
@Murph It's possible to eat lower carbs without going full on keto. Perhaps this is what our experience suggests would be good for you?
Perhaps this is where I end up. But I'm tempted by the idea of limitless ketosis energy!! worth a shot, i'd say.
 

rel8ted

Senior Member
Messages
451
Location
Usa
Perhaps this is where I end up. But I'm tempted by the idea of limitless ketosis energy!! worth a shot, i'd say.
I’ve been keto for a couple years. There ARE times when I have paused, like after surgery when it was just easier to eat out of a box. I generally have much better feeling of well being on keto due to grain sensitivities. I do not feel like I have more energy though.
 

nerd

Senior Member
Messages
863
I just think it's a false promise.

I don't promise anything. I'm just sharing my personal experience and I don't believe that keto diet can cure CFS/ME. I do think that it provides helpful metabolic support and can provide energy to the cells with less oxidative burden. But when the CAC is blocked, the keto diet can not fix the blockage.

I do have to add that I originally had neuromuscular and neuropathic symptoms and that these symptoms improved when I left out sugar from my diet, and that these symptoms disappeared when I began the ketogenic diet. I think that these neuropathic diabetes-like symptoms were caused by hyperglycolysis.
 

wabi-sabi

Senior Member
Messages
1,450
Location
small town midwest
I don't promise anything.
I'm not meaning to imply that you were @nerd.

I'm trying to speak to the hopes that many of us feel when we read about a new treatment online and the crushing of those hopes when it turns out, yet again, to be false.

I worry about us being very susueptible to false treatment promises because we are so very desparate to get better. Some of those promises turn out merely to be false and some of them hurt us temporarily or permanently.

Hmm... I think we need a thread of treatments to avoid because they can make us worse. For me, this was keto. I know that doesn't go for everyone, but I feel some obligation to the community to warn away from it, or at least the people in my subgroup.
 

Murph

:)
Messages
1,794
I'm planning to start keto soon. I'm pretty nervous as frankly, I notice big crashes after I try to do too much (e.g. walk the dog (<- pictured )) without sufficient carbs. I also had a hypoglycaemic episode last year that was worrying. I got low blood sugar and became quite disoriented while out in public.

But if I zoom the lens out a bit, I've also noticed that I have overall better health at times I'm eating fewer carbs. I *think* I crash a bit less on a low carb diet.

I'm nervous I'll crash in the first few days of keto, I guess I just need to take it easy while I try to adapt!

I'm in day six of keto now. It took me a few days to get into ketosis but I seem to be in it now. Here are my observations so far:

  • I feel noticeably better. I've been able to do more...
  • ...except when my digestion goes crazy. My intestines are used to a certain volume of soluble fibre and sourdough bread with all its positive microbiome effects. They are *not* enjoying a cheese heavy diet!
  • Coming in under 30g of carbs a day is hard. The vegetables that I usually eat,(capsicum, zucchini, kale, broccoli, fennel) and the quantities I eat them in, that alone would have me over 30g of carbs.
  • Plus I eat a greek yoghurt that is technically very low in carbs, but when you eat it in large volumes, the carbs add up. I can see that if you're aiming for a calorie deficit it'd be easier to come in under 30g/day. I'm not trying to lose weight tho.
  • it's socially isolating and weird and stupid to not be able to eat what other people are eating. I think this is the limiting factor: if keto gets me up and at 'em, i'll want to go out and see people, but if I can't eat like a normie, I can't easily go out for lunch or brunch or to someone's house!
 

wabi-sabi

Senior Member
Messages
1,450
Location
small town midwest
I'm in day six of keto now. It took me a few days to get into ketosis but I seem to be in it now. Here are my observations so far:
Thanks for the updates.

Can you describe feeling better in more detail? What more are you able to do? Do you get less PEM? Or more activity before triggering PEM?

Will be interesting to see how long this lasts.
 

Murph

:)
Messages
1,794
Thanks for the updates.

Can you describe feeling better in more detail? What more are you able to do? Do you get less PEM? Or more activity before triggering PEM?

Will be interesting to see how long this lasts.

Yesterday I took my little kid to the playground. Usually at the end of that I'd be wiped and want to go home. Instead I said to myself, hey, let's just pop in to the supermarket. I felt tired by the time I got home and I rested in the agternoon. But here I am the next day, not feeling PEM at all. It's exciting and I guess I have to be careful not to overdo it.

Here's an odd thing I've noticed: puffing. I found myself on a street corner, my shoulders rising and falling. I've not been short of breath like that for years - I assume oxygen has not been the limiting factor in my energy production, it's something else that kicks in first. But walking along yesterday I felt myself straining for breath. It reminded me of the effects of the exercise I used to do pre ME.
 
Messages
47
I haven't done keto, but I have done grain-free/low-carb, and I feel better under that arrangement. I don't think my wife could handle it if I tried switching to a ketogenic diet!

I am onboard with the theory that ME/CFS symptoms are largely caused by excessive lactate/lactic acid. It make sense in the context of pacing, and if keto helps, that's another bit of support for the idea.
 

livinglighter

Senior Member
Messages
379
I'm planning to start keto soon. I'm pretty nervous as frankly, I notice big crashes after I try to do too much (e.g. walk the dog (<- pictured )) without sufficient carbs. I also had a hypoglycaemic episode last year that was worrying. I got low blood sugar and became quite disoriented while out in public.

But if I zoom the lens out a bit, I've also noticed that I have overall better health at times I'm eating fewer carbs. I *think* I crash a bit less on a low carb diet.

I’m also interested to see how you do @Murph as what you previously said above applies to me. Except I need a carb to help me during the crash episodes after I over do it, which is daily.

I get to a stage on keto pretty quickly where I crash again from overdoing it even worse because I felt better and then need to consume even more carbs/sugar during the crash.