First time in remission with ketogenic diet

[bertiedog]

Since we have ME, a very serious disease with a metabolic component, for those PWME where it could work I believe it will only work if we are going to therapeutic levels of ketosis, similar to other diseases where this is used as a treatment (cancer, epilepsy). Therefore we have to manage what we eat religiously and have to accurately measure our GKI from blood at regular intervals and make adjustments if needed.

I do get what you are saying here but the migraines I am getting are killers and don't go away. This is partly because I haven't eaten any carb from 6 pm till 7 am so I just have to add a tiny snack around 8.30 pm to try and prevent this. It's only about 3 or 4 gm net carbs with good fats and I also need to have around 8 gm carbs for breakfast for the same reason. I have read of a few others with severe migraines who seem unable to go lower than 35 or 40 net grams of carb.

Pam

 

[MEPatient345]

@leokitten You'll be glad to know I finally got a blood meter, and am officially in ketosis, and with an ok GKI too! Yay me.

I took my reading just before lunch. Glucose was 3.5, ketones, 2.9 and ratio is 1.2. This is with me eating similar meals to what I started with 17 days ago, so hopefully I’ve been in ketosis for much of that time. I still get occasional hunger pangs tho so I don’t think I’m fully fat adapted yet. Not feeling as terrible as last week but still not well enough to be out of bed and heart rate has been really high.

Am going to see if I can up my ketone levels and get ratio lower. I could cut more carbs I think. Yesterday I gorged on a sautéed head of broccoli with Parmesan and toasted pine nuts for dinner.. not realizing broccoli and pine nuts are not quite low enough. It was delicious tho!

 

[leokitten]

@leokitten You'll be glad to know I finally got a blood meter, and am officially in ketosis, and with an ok GKI too! Yay me.

I took my reading just before lunch. Glucose was 3.5, ketones, 2.9 and ratio is 1.2. This is with me eating similar meals to what I started with 17 days ago, so hopefully I’ve been in ketosis for much of that time. I still get occasional hunger pangs tho so I don’t think I’m fully fat adapted yet. Not feeling as terrible as last week but still not well enough to be out of bed and heart rate has been really high.

Am going to see if I can up my ketone levels and get ratio lower. I could cut more carbs I think. Yesterday I gorged on a sautéed head of broccoli with Parmesan and toasted pine nuts for dinner.. not realizing broccoli and pine nuts are not quite low enough. It was delicious tho!

We are all very keen on seeing if this will work for you and improve symptoms. Please try it for a few more weeks if you can!

Since you are severe ME and did not exhibit any of the early clues I’ve mentioned I’m really interested in seeing what unfolds...

 

[leokitten]

FYI for everyone... why you shouldn’t do your glucose and ketone measurements first thing in the morning, before waking up your body raises your glucose to get you up out of bed and going. It’s called the “dawn phenomenon” and actually starts a few hours before you wake up. For that reason it’s best to do your blood measurements hours after breakfast, if you have any (which I don’t), and just before lunch like @Silencio did

 

[Cath]

Hi leokitten and anyone else who might be able to help answer a few questions for me.
Do you think I could do Keto even though I am fructose intolerant and can’t eat eggs or dairy (among over things)?
I tried a doing Keto a couple of months ago and ended up stopping because I just couldn’t figure out what to eat.
I used the Keto sticks and they showed I was in Keto for a while.
I have been crashing at the drop of a hat lately and I’m not too sure what’s going on.

Thanks for taking the time to read this,
Cheers

 

[MEPatient345]

Hi Cath, without eggs or dairy might take more work but is probably doable. Here are some other keto approved good fat source foods..
Seeds like chia, sunflower, flax and pumpkin
Nuts like almonds, pecans, walnuts and cashews
Non dairy Milk / yogurt / creams like coconut, almond and cashew
Olives and olive oil
Oily fish, chicken and meat (preferably fattier cuts, or with skin)
Avocado

Just add generous amounts of the above to green or cruciferous vegetables and low glycemic fruits like berries, and track using an app to try and stay on top of total carbs.

 

[leokitten]

Hi leokitten and anyone else who might be able to help answer a few questions for me.
Do you think I could do Keto even though I am fructose intolerant and can’t eat eggs or dairy (among over things)?
I tried a doing Keto a couple of months ago and ended up stopping because I just couldn’t figure out what to eat.
I used the Keto sticks and they showed I was in Keto for a while.
I have been crashing at the drop of a hat lately and I’m not too sure what’s going on.

Thanks for taking the time to read this,
Cheers

Hi @Cath - it’s totally doable without eggs and dairy. I don’t usually eggs and the only dairy I have is cheese. But even without those there are so many possibilities. It’s much easier to do dairy-free keto than to do vegan keto, though even vegan keto is doable.

 

[Mary]

@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

 

[sb4]

@Mary I'm really not sure about the D-ribose but even if it does count as carbs, you should be able to enter ketosis under 20g carbs, so you still have the tiny wiggle room of 5g carbs. Just remember to keep protein moderate, it's easy to overdo it.

 

[Cath]

Hi Cath, without eggs or dairy might take more work but is probably doable. Here are some other keto approved good fat source foods..
Seeds like chia, sunflower, flax and pumpkin
Nuts like almonds, pecans, walnuts and cashews
Non dairy Milk / yogurt / creams like coconut, almond and cashew
Olives and olive oil
Oily fish, chicken and meat (preferably fattier cuts, or with skin)
Avocado

Just add generous amounts of the above to green or cruciferous vegetables and low glycemic fruits like berries, and track using an app to try and stay on top of total carbs.

Thanks for your reply Silencio, those suggestions look good. I’ve just downloaded a Keto App and am gearing up to start in a few days.
I’m a bit nervous about it but am willing to give it a proper go. I decided I will start with the fast then progress from there.
Cheers

 

[Cath]

Hi @Cath - it’s totally doable without eggs and dairy. I don’t usually eggs and the only dairy I have is cheese. But even without those there are so many possibilities. It’s much easier to do dairy-free keto than to do vegan keto, though even vegan keto is doable.

Thanks leokitten, I’ve decided to start the Keto diet sometime this week. After doing a bit of checking I could only find the Keto-MOJO in Australia for about $230. I will try and get to a chemist and see if I can buy a cheaper one. It is a lot of money to outlay if I can’t manage to stay with the diet.
When I did the diet a couple of months ago I was very haphazard about it, didn’t plan ahead or keep a check on what I was eating. Hopefully this time I will be able to do it properly and stay with it.

The Keto App you mentioned doesn’t seem to be very good here in Australia. From the reviews it seems that a lot of the foods aren’t Aussie ones and you need to pay a subscription to use it.
I downloaded the "Ketodiet" App instead. It was pricey ($13.99) but is a one off payment which I prefer.

Another question....
I had my gallbladder removed a few years ago. Do you think this will have a negative impact on my ability to do Keto?

A little info about me... I got Mono about 13 years ago, was diagnosed a couple of years later when I just couldn’t get well.
My journey has been different and varied, as has everyone’s.
I’ve been completely bed ridden at times, housebound at others and have also had times of great improvement. I’ve see sawed between being hopefull and suicidal. My official diagnoses are ME, CFS, FM and CIRS

Cheers

 

[pamojja]

I downloaded the "Ketodiet" App instead. It was pricey ($13.99) but is a one off payment which I prefer.

There is also https://cronometer.com/, where one can enter targets for macronutrients. It is for free.

 

[leokitten]

Another question....
I had my gallbladder removed a few years ago. Do you think this will have a negative impact on my ability to do Keto?

@Cath do not do this diet if you don't have a gallbladder. That is a major contraindication. You can have serious complications without a gallbladder.

There is so much conflicting information on the web about this, many sites say don't do it, other sites say you can but with some adjustments, e.g. https://www.ruled.me/how-to-follow-keto-without-a-gallbladder/. Honestly I would be very careful, it could be dangerous

 

[Cath]

@Cath do not do this diet if you don't have a gallbladder. That is a major contraindication. You can have serious complications without a gallbladder.

There is so much conflicting information on the web about this, many sites say don't do it, other sites say you can but with some adjustments, e.g. https://www.ruled.me/how-to-follow-keto-without-a-gallbladder/. Honestly I would be very careful, it could be dangerous

Oh boy thanks for letting me know leokitten.
I’ll put a hold to my plans while I have a good look into it. Maybe see if my Dr knows much about it.

Thanks so much for sharing your journey with us and for all the info you have given.

It’s 1:30am here so I think I should get some sleep (well try anyway)

Cheers

 

[Gondwanaland]

I’ve been completely bed ridden at times, housebound at others and have also had times of great improvement. I’ve see sawed between being hopefull and suicidal. My official diagnoses are ME, CFS, FM and CIRS

You should definetly be careful with fructose though (see studies attached).

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.

Why don't you follow a keto diet religiously + 15g Ribose. Don't worry about it in the beginning, who knows if you won't just need less and less with the diet?

 

[CJB]

@Cath I haven't had a gallbladder for over 30 years and I'm doing well on keto. I was concerned but desperate for some improvement. Might be a good reason to ease into it though. Good luck.

 

[MEPatient345]

@Cath keto is a very extreme change to make to your body’s metabolism — even with a gallbladder it was a huge shock to my system. I nearly passed out a few days as my OI and POTS went haywire. 18 days in, my resting heart rate is much higher than normal and I am still weaker, with worse neurological symptoms. I am hanging in there bc it takes 2 to 3 months to regenerate more mitochondria and maybe up to 6 weeks to be fully fat adapted, so I want to see if things improve.

There are a lot of changes to ones blood chemistry on keto. Your blood uric acid almost doubles. Your nitrogen goes up (maybe this is same thing? I can’t find reference). It takes about 2 months for all these to regulate. There may also be gender differences in how we metabolize nutrients. So, this way of eating is not something to be undertaken lightly, and if you have a doctor to consult with, I would recommend that.

 

[Wayne]

Not sure how relevant this is to this thread, but I've been doing a lot of research on mHBOT chambers that can be purchased and used in our homes. I've been surprised how many references and testimonials I've run across about improvements in gut health from using them.

The variety of testimonials ranges from the severe gut problems experienced by many autistic children, to better overall digestion and assimilation. Below is a snippet from one of those testimonials (from THIS SITE).

"I started out doing hbot at 2.0 ata at my doctor’s office and had amazing results with overall inflammation reduction, energy, brain clarity, and complete remission of gastroparesis symptoms. Previously I took 9 digestive enzyme capsules per day along with intestinal and colon cleansers. That’s about 21 capsules per day that I no longer need for my digestion and bowels to function."

Below is a link to a 3-MIN video on the HBOT unit I'm leaning toward getting...

Summit to Sea Dive Series Hyperbaric Chamber - YouTube

 

[Gondwanaland]

Your blood urea almost doubles.

Did you mean uric acid? Perhaps this is one of the reasons I have so much trouble with LCHF? My UA is already above range...

 

[MEPatient345]

Did you mean uric acid? Perhaps this is one of the reasons I have so much trouble with LCHF? My UA is already above range...

Yes! Sorry — uric acid. I will edit my post for accuracy, and I just added a link to a page about this which I found really useful. It lays out the timeline of what happens in your body.