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#1 BuxomBrewster

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Posted 13 June 2018 - 07:18 PM

My doctor thinks this is the way around my glycogen problems.  He also thinks I have a glucose metabolism problem, specifically that I am deficient in the enzyme to get glucose into the brain.  It looks like his daughter has this problem and we are very similar in some weird symptoms.  So last Thursday I started into a keto diet.  Yesterday my ketone levels show that I succeeded in switching over to ketosis.  It was a possibility that my body would refuse due to my thyroid meds, but thankfully that wasn't the case.  I could feel the difference mentally almost right away.  Now I wait to see how long it takes my muscles to accept ketosis.  

 

So if this works, I will be on a keto diet for life.  I did Atkins before and crashed when my fat stores ran out.  That was when I had severe muscle weakness problems.  I didn't know about the need to up my fat intake, so hopefully this time I will be able to maintain health while staying in ketosis.  I ordered 30 ducks so that I have a lot of duck fat.  I'm making goat cheese.  This is a lot of work.  But if it works, it will be worth it.  I have hopes that I will begin tolerating more foods, have more energy and less muscle pain.  

 

It's hard to eat enough, though.  I'm hungry, but I don't have any options, so I will have to cook a bunch tomorrow.


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#2 Mike Green

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Posted 13 June 2018 - 07:25 PM

Make sure you eat enough fat. It's easy for a keto diet to turn in to a low carb, high protein diet which is dangerous. Keep supplementing with electrolytes. Once you get the insulin under control you can increase carbs with vegetables. Google keto flu. It sometimes lasts for a few weeks to a few months. When you get in full keto mode you'll be amazed that you eat once a day and not get hungry.


Edited by Mike Green, 13 June 2018 - 07:32 PM.

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#3 Mike Green

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Posted 13 June 2018 - 07:40 PM

It might be worthwhile to have a discussion about gut health and the introduction of  L.Plantarum to the diet with your Doctor.


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#4 Mike Green

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Posted 13 June 2018 - 07:47 PM

https://www.youtube....owcarbdownunder


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#5 Mike Green

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Posted 13 June 2018 - 07:51 PM


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#6 idajack

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Posted 13 June 2018 - 08:46 PM

Have you ever tried any of the cbd oils? Or even a bit of thc? I’d think you are just the sort of weird mixed up that often seems to benefit from cbd and it might be that a sativa heavy strain of herb would offer some energy and pain management.
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#7 Trub L

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Posted 13 June 2018 - 08:51 PM

Not a doctor, but foregoing the organ shutdown fad diet and smoking a doob does indeed sound like the better path. Either way, be careful!
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#8 Brownbeard

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Posted 14 June 2018 - 12:11 AM

Not a doctor, but foregoing the organ shutdown fad diet and smoking a doob does indeed sound like the better path. Either way, be careful!

I concur.
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#9 Vagus

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Posted 14 June 2018 - 03:10 AM

My doctor thinks this is the way around my glycogen problems.  He also thinks I have a glucose metabolism problem, specifically that I am deficient in the enzyme to get glucose into the brain.  It looks like his daughter has this problem and we are very similar in some weird symptoms.  So last Thursday I started into a keto diet.  Yesterday my ketone levels show that I succeeded in switching over to ketosis.  It was a possibility that my body would refuse due to my thyroid meds, but thankfully that wasn't the case.  I could feel the difference mentally almost right away.  Now I wait to see how long it takes my muscles to accept ketosis.  

 

So if this works, I will be on a keto diet for life.  I did Atkins before and crashed when my fat stores ran out.  That was when I had severe muscle weakness problems.  I didn't know about the need to up my fat intake, so hopefully this time I will be able to maintain health while staying in ketosis.  I ordered 30 ducks so that I have a lot of duck fat.  I'm making goat cheese.  This is a lot of work.  But if it works, it will be worth it.  I have hopes that I will begin tolerating more foods, have more energy and less muscle pain.  

 

It's hard to eat enough, though.  I'm hungry, but I don't have any options, so I will have to cook a bunch tomorrow.

It is an interesting theory that sounds like the GLUT3 glucose importer might be under expressed.  It is also a condition that only appears in experimental animal models at this time.

 

Have they run any tests to confirm this diagnosis? 


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#10 BuxomBrewster

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Posted 14 June 2018 - 04:32 AM

It is an interesting theory that sounds like the GLUT3 glucose importer might be under expressed.  It is also a condition that only appears in experimental animal models at this time.

 

Have they run any tests to confirm this diagnosis? 

This may be what he is talking about.  His daughter is helping with the research, and at this time we're grasping at straws to try to figure out what is wrong and how to fix it.  Without a solution she won't be able to continue her chosen career because her mind just can't concentrate on it.  He's looking into testing options.  We are having some genetic testing done for the family for some of our other issues.  It should be interesting.  He would like me to look into testing for Type II Glycogen Storage Disorder so that I have a definite diagnosis on that.  They symptoms definitely point toward it.  

 

I have become very frustrated with trying to figure this out.  My diet prior to ketosis wasn't fun.  Trying to stay ahead of my carb intake is difficult.  I was dosing carbs like I dose my potassium, calcium, thyroid meds and cortisol.  He was also right that a heavy sugar load to deal with a stressful situation desensitizes the receptors and I have days of what equates to a hangover afterward.  Basically I have to live in a state of constant hangover to function.  Not fun.

 

I have some CBD oil in the house to try, but I don't think it's going to help much if at all.  It didn't do anything for Scott.  That and medical marijuana are just treating symptoms, not addressing the root cause.  This stuff is going to kill me, slowly and not exactly in a fun way.  My lungs will eventually not have enough fuel to continue working and I am going to struggle to breathe.  People die of Type II Glycogen Storage Disorder of not getting enough oxygen.  This gives my body an alternate fuel source that gets around all these glucose problems.  He's done research into the safety of it, and this diet has worked for people with a lot of severe problems and stopped their need for nasty medications.  It needs to be done correctly, but it looks like a really good option for people like me.


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#11 Vagus

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Posted 14 June 2018 - 04:51 AM

Diabetes has been ruled out?
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#12 Vagus

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Posted 14 June 2018 - 04:57 AM

Without biopsies and verified issues with glycogen storage and importer presentation/distribution, this sounds more like a cholinergic disorder.

Diabetes should've been an easy differential to exclude
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#13 BuxomBrewster

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Posted 14 June 2018 - 05:13 AM

Diabetes is definitely ruled out.  A1C is good, glucose levels are around 80.


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#14 Vagus

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Posted 14 June 2018 - 05:25 AM

Pumpes disease is possible, family history? Enlarged liver? Respiratory infections?
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#15 BuxomBrewster

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Posted 14 June 2018 - 05:37 AM

Do you mean Pompe's disease?  That's the common name for it.  That's what I think I have, the adult onset form.  No real family history, but my dad definitely shows the sugar craving part.  The sugar craving isn't on the list of symptoms, but it definitely is the way to self-medicate.  You feel like crap unless you are pounding the sugar, and you need more and more to get the same effect.  And it's a lot of sugar.  I found it to be on the order of 1 to 1 1/2 cups a day right now.


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#16 Vagus

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Posted 14 June 2018 - 05:39 AM

Lol, autocorrect. Yeah. But no liver symptoms? Primary site of glycogen storage in the body...
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#17 Vagus

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Posted 14 June 2018 - 05:44 AM

So 1,000 to 1,500 kcal a day from sucrose?
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#18 the_stain

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Posted 14 June 2018 - 05:59 AM

I'll tell you a couple things about keto.

 

My wife, you see, is doing keto for weight loss, and as a supportive husband who could stand to lose 30 pounds of my own, I have decided to start doing it with her... mainly because it's easier if we both eat the same stuff and also because it's easier to count carbs than calories.

 

I have learned that:

 

1. for weight loss, it seems to be very effective.  The initial water-weight loss is pretty significant but it seems to keep up after that.  My wife has been losing weight steadily.  I myself have lost about 8 pounds so far but only been doing it a couple weeks.

 

2. omg keto suuuuuuuuuuuuuuuuuuuuuucks I need carbs and I would stab a baby for a dinner roll.


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#19 BuxomBrewster

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Posted 14 June 2018 - 06:41 AM

So 1,000 to 1,500 kcal a day from sucrose?

Yeah, but I did figure out how to do it with oatmeal and agave nectar.  I can get to a base level with it, but if I do anything strenuous I have to drink sugar water to cope.  Another telling symptom is that if I get asthma I can make it go away quickly by drinking sugar water.  I just kept around some all natural cream soda and would drink one when I had trouble breathing.  Far more effective than albuterol.


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#20 BuxomBrewster

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Posted 14 June 2018 - 06:45 AM

I'll tell you a couple things about keto.

 

My wife, you see, is doing keto for weight loss, and as a supportive husband who could stand to lose 30 pounds of my own, I have decided to start doing it with her... mainly because it's easier if we both eat the same stuff and also because it's easier to count carbs than calories.

 

I have learned that:

 

1. for weight loss, it seems to be very effective.  The initial water-weight loss is pretty significant but it seems to keep up after that.  My wife has been losing weight steadily.  I myself have lost about 8 pounds so far but only been doing it a couple weeks.

 

2. omg keto suuuuuuuuuuuuuuuuuuuuuucks I need carbs and I would stab a baby for a dinner roll.

I don't have problems with the cravings.  After you have to say no to yourself for so many foods, like almost everything, you get used to denying your cravings.  I know that the carb cravings go away eventually.  If I go back, then they come back with a vengeance, but if I stay away I will be fine.  It's the headaches that are horrible.  I had 3 days of really bad headaches that I knew would go away if I had some sugar.  Those are mostly gone now.  Now I'm waiting for my muscles to adjust.  I'm feeling pretty weak today and I'm shaking a lot.  The same symptoms that I had when I needed to eat some carbs.  I'd get this at least 2-3 times a day when I was eating sugar to manage things.


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