First time in remission with ketogenic diet

[MEPatient345]

Yep.. my diet throughout was full of nutritious whole foods.. eggs, vegetables, fish, meat, nuts, seeds, dairy.. so I don’t think it was any type of nutritional deficiency. Also, my diet didn’t change vastly from what I ate prior to keto, except for removing rice, potatoes, sugary fruit and bread. So I think it had something to do w the metabolism shift. I was also supplementing calcium, magnesium, potassium, thiamine, b vitamins and co-q10 throughout trial.

 

[bertiedog]

just quit keto.. feel too bad on it to continue. Also having a bad problem with eye dryness at night which started when I started keto. My eyelids are like sandpaper and drops don’t help, even waking up to put them in. Saw some reddit threads about people w same issue.

Do you know the net carbs that you were eating? I cannot do full Keto in the mornings (probably my adrenal insufficiency) but I can do very low carb after lunchtime? I have more consistent energy but that is on around 35-40 g net carbs.

Pam

 

[MEPatient345]

Do you know the net carbs that you were eating? I cannot do full Keto in the mornings (probably my adrenal insufficiency) but I can do very low carb after lunchtime? I have more consistent energy but that is on around 35-40 g net carbs.

I was doing between 20 and 30 a day, and had stopped counting as was getting ketone readings of between 2.4 and 3.1 on blood meter.

I’m thinking of trying 35 to 50 and will see how that goes.. I don’t know if that kicks me out of ketosis. Also I wonder if that might leave me in a not ketosis but not quite enough glucose grey area... Shall experiment some more. I ate a slice of toast at lunch and it quickly gave me a little lift in energy.

 

[Gondwanaland]

So I think it had something to do w the metabolism shift.

My response to Low Carb was undetectable estrogen, so the diet is a no-no for me. As a result of lowered estrogen dry eye might occur.

 

[MEPatient345]

My response to Low Carb was undetectable estrogen, so the diet is a no-no for me. As a result of lowered estrogen dry eye might occur.

Huh.. that’s interesting @Gondwanaland. Thanks for letting me know.

 

[Gondwanaland]

Huh.. that’s interesting @Gondwanaland. Thanks for letting me know.

Lara Briden addresses this issue in many blog posts (they are from a couple of years back I think). She suggests that such women should add tubers back to their plates.

 

[dannybex]

I just quit keto.. feel too bad on it to continue. Also having a bad problem with eye dryness at night which started when I started keto. My eyelids are like sandpaper and drops don’t help, even waking up to put them in. Saw some reddit threads about people w same issue.

I might try again at a later point if I feel stronger.

Could be that you need more carbs.

http://perfecthealthdiet.com/category/disease/dry-eyes/

 

[sb4]

My brief update:
Been eating less than 20g carbs since friday with protein below 100g, except for 2 days where it was around 150g. Did a 40hr fast starting day 4; on day 5 I had a banging headache in the evening and a slight worsening of POTS indicating I was in ketosis. That went away the next day.

So far I feel better short term after meals, but have had dodgy spells where I have felt pretty bad and some different type of heart pounding than I am used to.

All in all it's going pretty good so far. I have gotten past the point where I would start to feel much worse and continue to feel worse the last couple of times I tried it.

I think that the differences this time are. I'm in better health this time around, and I think my nutrition is more sensible also. By this I mean that before I was getting too much fat I think without enough nutrients. I would have some meat and a little veg and a ton of butter. This time I am including dairy, and being a little better making sure I have minerals (supplements and diet).

So far so good although I am hoping the weird heart pounding preventing me from sleeping last night was just a blip.

 

[Gondwanaland]

Could be that you need more carbs.

http://perfecthealthdiet.com/category/disease/dry-eyes/

Interestingly both my husband and I get stabbing rectal pain (not fun!) after zero starch/sugar meals...

@Silencio regarding hormonal imbalances, I found that I (currently) can only tolerate 1/4 egg yolk per egg, otherwise the vit A in them shifts my hormonal production to androgens causing hair loss (Male Pattern Baldness) and facial hair

Despite not tolerating the diet, I am all for it and am sure it can do wonders for a large subset of folks, considering that it also does wonders for "healthy" people. Actually I believe that having CFS increases the chances of developing Metabolic Syndrome, for several reasons.

 

[bertiedog]

I ate a slice of toast at lunch and it quickly gave me a little lift in energy.

Again this goes to show how different we all are. If I eat just half a slice of gluten free toast I feel sleepy and very groggy however a Nairn no sugar oatcake doesn't do this at all so I haven't eaten bread for years, its definitely not something my body wants.

It's certainly worth trying raising the carbs a bit and I have read that you can still get very good benefits without actually being in full ketosis. For me its the amount of fat that I have plus low carb that gives me better more sustainable energy.

Pam

 

[MEPatient345]

Agreed @bertiedog, we are all so different! I just had potatoes with dinner.. was able to leave the house after to be brought for a short drive to see the sea! Back to my more “normal” ME state with just a few carbs.. Phew. I just wasn’t producing enough energy with fat. But yeah, I will play with carb and fat quantities and see where I land.

 

[Murph]

I've lost a lot of weight cutting back carbs but I'm having a surprisingly high number of crashes.

Now, I've never aimed to get into full ketosis. So perhaps that's the problem. I can't say that keto would not be great for me. But this low carb regime has been a big pain. (still, probably worth it for losing like 4kg in 3 weeks.)

 

[bertiedog]

Agreed @bertiedog, we are all so different! I just had potatoes with dinner.. was able to leave the house after to be brought for a short drive to see the sea! Back to my more “normal” ME state with just a few carbs.. Phew. I just wasn’t producing enough energy with fat. But yeah, I will play with carb and fat quantities and see where I land.

That's good news and I am sure you are right that you are listening to your body. There is no question it can be extremely difficult to know what exactly is the right diet for each individual, it's definitely not a case of one size fits all.

If I didn't eat some carbs in the morning I wouldn't be able to leave the house but when I have around 10 g net carbs plus protein and a fair bit of fat I can do a lot more physical stuff but always have to have a snack of some peanuts and seeds plus tea half way through the morning or I would be in a state of collapse!

I hope you continue to improve now.

Pam

 

[leokitten]

Update:

It's been just over two weeks now since I recovered from the crash I had after starting the ketogenic diet (see earlier in this thread). I had transitioned and was on the ketogenic diet for two full weeks before that crash. These two weeks I had more activity than the two weeks before the crash, both mental and physical. I'm working a lot more (although still from home to save energy) and had more days when I went on walks and errands.

I felt better these two weeks than the first two weeks of the diet. The same symptom remissions and significant improvements I listed have continued. The only symptoms blips I had these two weeks were:

1. During a couple of long walks it was really sunny and I forgot my sunglasses. Due to the diet I do not have photosensitivity anymore to warn me, so when I got home the ME "hungover like" deep eyeball pain I've described came back, it lasted the rest of the day and disappeared by the next morning. For all my subsequent walks I took sunglasses and never got the symptoms again.
2. This past Tuesday, I started getting blip of the isolated fatigue symptom I described, which was my only symptom warning sign before the previous crash. To explain in more detail, it's a fraction of the level of crushing ME fatigue I would feel before the diet, but it is still noticeable. After a day or so of it persisting, I started another 48-hr intermittent fast (IF). Within like three hours the symptom quickly vanished. I find this very intriguing, wondering what is happening with my body.

For the first week of this second two week period, I experimented with not tracking my macros with my keto app, just to take it easier after that crash and to see how well I could manage in my head knowing pretty well the food I have at home. Having the glucose+ketone meter to give me accurate feedback on how well I am doing makes this more feasible. I was able to keep a pretty consistent GKI = 2 during this time. As a side observation, I found I feel equally as good on a GKI = 2 versus something lower, so now I have more information going forward.

I wonder does anyone else who improves on IF also find that it is a PEM reliever or even shielder?

 

[Mary]

I felt better these two weeks than the first two weeks of the diet.

So glad to hear this! I'm putting off starting the keto diet for a few weeks - I don't want the keto flu to ruin my last chances of going in the pool where I live this summer. I haven't been able to get in the pool the last 4 weeks, so hope to be able to do it 2 or 3 more times. I don't actually "swim" in the pool - it guarantees a crash, but I love just being in the water, though would love it much more if I could actually swim!

 

[leokitten]

So glad to hear this! I'm putting off starting the keto diet for a few weeks - I don't want the keto flu to ruin my last chances of going in the pool where I live this summer. I haven't been able to get in the pool the last 4 weeks, so hope to be able to do it 2 or 3 more times. I don't actually "swim" in the pool - it guarantees a crash, but I love just being in the water, though would love it much more if I could actually swim!

How do you deal with all the sun? Before this diet my photosensitivity would be strong enough that it would cause PEM if out in the sun long enough.

 

[Mary]

How do you deal with all the sun? Before this diet my photosensitivity would be strong enough that it would cause PEM if out in the sun long enough.

I don't have photosensitivity. I'm very fortunate in that I don't have a lot of issues many here have - no severe brain fog or POTS or photosensitivity or pain. I do get PEM like clockwork when I overdo it, mentally or physically, and get sick every time I crash (recovering from being sick right now), and sleep problems.

When my adrenals were very weak (before I developed full-blown ME/CFS), my eyes were photosensitive - the pupils were unnaturally dilated. My chiropractor is the one who picked up on this. I'm wondering if your photosensitivity has anything to do with your adrenals perhaps?

 

[Mary]

So far so good although I am hoping the weird heart pounding preventing me from sleeping last night was just a blip.

Are you staying on top of your electrolytes? Everything I read says it's very common to become deficient in potassium and magnesium and sodium while on a ketogenic diet. And I know that low magnesium and potassium can cause palpitations or other cardiac symptoms.

 

[leokitten]

I don't have photosensitivity. I'm very fortunate in that I don't have a lot of issues many here have - no severe brain fog or POTS or photosensitivity or pain. I do get PEM like clockwork when I overdo it, mentally or physically, and get sick every time I crash (recovering from being sick right now), and sleep problems.

When my adrenals were very weak (before I developed full-blown ME/CFS), my eyes were photosensitive - the pupils were unnaturally dilated. My chiropractor is the one who picked up on this. I'm wondering if your photosensitivity has anything to do with your adrenals perhaps?

I did a full 24-hr urine catecholamines analysis twice (probably a year apart) and my adrenals were completely normal. That test is way more accurate than blood catecholamines. Also I never exhibited any glaring symptoms of adrenal fatigue like dilated pupils. So not sure, I really think it's just a symptoms of ME because I got it like every other symptom right away after falling ill.

 

[sb4]

Are you staying on top of your electrolytes? Everything I read says it's very common to become deficient in potassium and magnesium and sodium while on a ketogenic diet. And I know that low magnesium and potassium can cause palpitations or other cardiac symptoms.

Yeah I noticed that my BP is a lot higher on ketosis which made me think electrolytes. I had tried magnesium 2 nights before but perhaps it made me worse. This heart pounding at nigh has been consistant the last 3 nights and ruined my sleep for 2 of them.

I have purchased some potassium citrate which I intend to experiment with. Interestingly I was having the night heart problems last night and I took a decent amount of potassium citrate and switched my mirtazapine dose back to night time and I slept ok.

Will be able to test the high BP stuff better today as I recieve k citrate.

Interestingly my hair mineral analysis shows low Na, K, and Mg. I am also fairly adverse to salt. Like bacon now tastes pretty bad and I'm sure it's the salt in it, when I have it in reasonable quantities. I think that the hair minerals test could be right in that I am deficient in all 3 which means whenever I raise one of them too high I end up flushing more of the other 2 out in pee.