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ron davis ME & you & us and glucose?

humanrising

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I watched one of Ron Davis's updates and he mentioned that " people with ME use up glucose faster then healthy people" something to that affect.

I have no idea which update this was but I am hoping that someone here who is following his research might know if he has anything else to say about this glucose or diet with ME?

I am constantly struggling with what to eat and my need to eat all the time or to eat sugar. I know that sugar esp simple sugar is "bad" for us....in excess yadyadyada. I also know that harmful bacteria and the like make you crave sugar. ( if you haven't seen it "that sugar movie" with Gameu is great!)

I want to make sure that nothing that I am eating is making me worse but doing an elimination diet is like climbing mount Everest with my lack of energy and my need to eat add my dislike for the few things you can eat on a elimination diet :0

. really curious if this "higher metabolism" feeling is a actual symptom vs all the other reasons there are to need and want to eat all the time.
 

ljimbo423

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I am constantly struggling with what to eat and my need to eat all the time or to eat sugar.
I have this same struggle with what to eat and feeling hungry most of the time. It feels like my blood sugar goes low very fast after I eat, even though I eat low carb, high protein, high fat and very, very little sugar.

The other thing that happens to me, is within 3-4 hours after I eat a meal, I start to feel tired and my anxiety starts going up, sometimes A LOT!

So it does seem like I'm using carbs/glucose very fast for some reason. As far as diet goes, Chris Armstrong recommended a keto type diet. I can't do keto without felling very sick, so I do the next best thing, a low carb diet.

To be honest though, I don't feel like the diet has helped much with my insatiable hunger and blood sugar issues. Although it has helped with dysbiosis and leaky gut.
 

Zebra

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Hi, @humanrising.

You have raised a topic that I am also very interested in. Thank you!

I have a follow-up appointment with an endocrinologist next month, and I plan to discuss low blood sugar issues with her.

Selfishly, what we discuss here may help me arm myself with knowledgeable questions and concerns that I can bring to my endo appt in February. However, if the doctor doesn't dismiss me, and I receive worthwhile information, I will gladly share with you and the PR community.

Like @ljimbo423, I eat a very clean, well balanced diet. Eating well was a passion of mine long before I got sick, so my diet is not the problem.

About the longest I can go between meals or snacks without experiencing what I perceive to be a low-blood-sugar crash is maybe 2.5 hours. This will happen even if I've made a point of eating "good fats" at my last meal/snack.

At this point, I will usually feel heavy, weak, and listless, and my cognitive function plummets. I cannot think, make decisions, or respond to questions. It is really quite shocking how disabling this can be. It's like having a mini crash until I've eaten and recovered.

My endo prescribed a blood sugar meter and supplies, so I am currently monitoring my blood glucose levels so I can present them to her in February. Here's what I've noticed so far (and I can provide actual data another time).

1. My baseline level blood glucose when checked upon waking and going to bed is always low normal.

2. My blood sugar does not increase much after a meal, when measured one hour after eating.

I really don't know if this is simply because my healthy meals don't spike my blood sugar or if something else is at play.

3. On many occasions, my blood sugar has noticably decreased after a meal, when measured an hour after eating.

I am just now learning about "reactive hypoglycemia," which I will ask my endo about in February.

Also, aside from a positive, then negative, antiGAD antibody, I have zero risk factors for diabetes.

I did have an unusual experience earlier this week. After a fasting MRI I needed food quickly. We happened to be near a doughnut shop, and much to my sister's surprise, I went in and ate a donut. Haven't had one in several years!!! My sister even snapped a few pictures of this momentous occasion. ;-)

After I finished the donut and small black coffee, I felt GREAT! I felt like a human being again! I told my sister, maybe the treatment for CFS is caffeine and sugar?!?!? ;-) (Obviously that last line is a joke, so no critical comments from the PR community, please.)

Have you ever had a beneficial physical or mental reaction after eating something high in sugar, @humanrising?

Z
 

ryan31337

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About the longest I can go between meals or snacks without experiencing what I perceive to be a low-blood-sugar crash is maybe 2.5 hours. This will happen even if I've made a point of eating "good fats" at my last meal/snack.

At this point, I will usually feel heavy, weak, and listless, and my cognitive function plummets. I cannot think, make decisions, or respond to questions. It is really quite shocking how disabling this can be. It's like having a mini crash until I've eaten and recovered.
Hi @Zebra,

I've gone through what you describe and have talked about it previously on these forums (2-3 years ago now). I know what you mean, the hypo events came on insidiously and eventually progressed to complete inability to think or remain upright , even sitting. Other symptoms involved cold sweats, inappropriate hunger, inappropriate thirst, bradycardia, wildly swinging blood pressure, blurred vision, extreme somnolence etc. I would eat a snack (usually carbs), lie down and come around 20-30 mins later feeling absolutely fine. This would happen 3-4 times a day and again waking me once in the night. BG readings were sometimes borderline low on fasting, but never notable.

It was a complete mystery to me and I hadn't made the connection with what I had been eating until I saw a very knowledgeable Endocrinologist, who diagnosed reactive hypoglycemia and made dietary interventions. Until that point I just assumed my CFS/ME had gotten worse. It was not classic diabetes of any variety.

My endo prescribed a blood sugar meter and supplies, so I am currently monitoring my blood glucose levels so I can present them to her in February. Here's what I've noticed so far (and I can provide actual data another time).

1. My baseline level blood glucose when checked upon waking and going to bed is always low normal.

2. My blood sugar does not increase much after a meal, when measured one hour after eating.

I really don't know if this is simply because my healthy meals don't spike my blood sugar or if something else is at play.

3. On many occasions, my blood sugar has noticably decreased after a meal, when measured an hour after eating.

I am just now learning about "reactive hypoglycemia," which I will ask my endo about in February.
The advice I got from the Endo was that you cannot spot these problems with random BG tests. You might show something unusual if doing a Glucose Tolerance Test in hospital with insulin monitoring, I recall there was at least one other member here who had one done with surprising results. Apparently a mixed-meal GTT is more sensitive if GI motility issues are involved in the underlying cause. There's multiple things at play, for me it seems like autonomic dysfunction best characterised by hyperadrenergic POTS was to blame. With late rapid gastric emptying (2-3hrs after eating) causing an excessive insulin release, and then an overly enthusiastic sympathetic system over-reacting to regulate it. In the literature the thoughts are that the problem is more to do with rapid/excessive changes made by the body causing the symptoms, rather than prolonged low BG as per diabetes.

This sort of issue is only really recognised by mainstream docs in patients that've had bowel resections or other major GI disruptions. 'Normal' patients will be told its a none-issue and 'just eat less cake'. This advice works until a point, you can increase protein/fats, but eventually if things are messed up enough this won't help. You'll be riding that carbohydrate roller coaster every time you eat. Thankfully my Endo treated a lot of patients with Orthostatic Intolerance/POTS and knew how significant this can be for us.

He 'prescribed' ketogenic diet and literally within a few days all the issues stopped. I remained on a very low carb diet for a couple of years, but have since been able to reintroduce small amounts of carbs again without too much issue. I am still too sensitive to eat a normal amount of carbs, if I go too far I start with the 'food coma' symptoms, but know to reign it back in before it progresses to the hypo events.

Unfortunately it seems that in some of us these alternative energy pathways don't work so well and nutritional ketosis can be very hard to obtain. I know of one case where there was significant symptoms and ketogenic diet could not be achieved, so the patient was treated with Octreotide with good results.

Have you ever had a beneficial physical or mental reaction after eating something high in sugar
Absolutely, just be prepared for the crash a couple of hours later!

Hope that helps,
Ryan
 
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It feels like my blood sugar goes low very fast after I eat, even though I eat low carb, high protein, high fat and very, very little sugar.
Same here.....occasionally I leave the house....and some huge issue is simply can I operate for 1.5 hours without this food collapse? And I become like immediately anxious... if the blood sugar wavers- which it likes to do.

Its like putting fuel into some gas tank yet you know its covered with swiss cheese holes...where did this fuel go?

Somehow I feel keto is just TOO FAR. I don't like how that feels. Sorry I just don't.
 
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Have you ever had a beneficial physical or mental reaction after eating something high in sugar, @humanrising?
I was imploding in the dentist's chair- blood sugar collapsed. Probably had not planned to be there for the very long time they had me stuck in the chair. I"m also having a big anxiety siezure over the dental details.

the dentist comes back and hands me a Strawberry filled Donut thingy, which I proceed to consume and am now saved.

I now know never to go traipsing off without- sugar rescue in my purse (grapes, the little baby food portable things are great! actually). (you can buy 30 more minutes).
 

bertiedog

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@Rufous McKinney I think the ideal snack contains fat, protein and some low glycemic carb. A mild cheese on a no sugar oatmeal is ideal or alternatively some whole food peanut butter on an oatcake. I never go anywhere without a small snack in my bag in a small container.

When I go to bed at night I have always got a homemade soy yoghurt with seeds and psyllium next to my bed and always eat this before I get out of bed in the mornings. Sometimes I will eat half of it it at 4 am if I cannot sleep and I do find this helps but I never eat anything with added sugar ever.

I find that fat is hugely important as it slows down the rate we digest any carb. I do well on organic coconut oil on a teaspoon with some added peanut butter or cashew butter or almond butter. Any of these taste delicious to me hence me never feeling the need for anything with added sugar.

The other thing I find is that if I am going to go for a walk with the dog then I need to eat something before I go but it does mean my blood sugar runs slightly higher than ideal although my HbA1C is still good at 34 and this is even with having to take a steroid each day!

Pam
 

ljimbo423

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Forgot to say that for me peanuts, seeds and cashews mixed together are a great booster between meals. So simple and yet delicious.

Pam
I eat a few ground almonds in my organic oatmeal every morning, some cashews for an early afternoon snack and 2 tablespoons of peanut butter between lunch and dinner every day.

This helps to hold me over and keep my blood sugar up between meals.
 
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I do well on organic coconut oil on a teaspoon with some added peanut butter or cashew butter or almond butter. Any of these taste delicious to me hence me never feeling the need for anything with added sugar.
Thanks for that idea...i should do that...I need to get a bit more coconut oil in ......camo with the nut butters!
 

humanrising

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guess I am not alone in this !!!!

would still love to know what Ron Davis found out, how he found this out and/ or if he has any ideas on what is driving us to burn glucose more then other humans.

hoping one of the wonderful smarties who is on top of Ron's research might be able to chime in!
 

Wally

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guess I am not alone in this !!!!

would still love to know what Ron Davis found out, how he found this out and/ or if he has any ideas on what is driving us to burn glucose more then other humans.

hoping one of the wonderful smarties who is on top of Ron's research might be able to chime in!
@humanrising - Bumping your thread in the hope that one of the PR “smarties” sees your question about Ron Davis and glucose. Tagging a couple of people (@Janet Dafoe (Rose49), @Ben H) who might have more regular access to Ron to answer this question.

I am also including a bag of “sugary treats” for the first “smartie” who is able to answer this question.. 😁

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humanrising

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I thought that ME folks are- not burning glucose properly, which is a major problem....glycolosis impaired.
its possible that I got it wrong..... I am smart as a ball of hair these days but I swore davis said we use it up faster. wish to heck I wrote down the video so i could watch it again and could say that "he did forsure say that"
 
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I came to this conclusion all by myself, I tell plp my glucose system is broken, and using the fat system (ketosis) is like going from a 4 to a 7 or 8. Makes a huge difference for me, and you don't even have to go all the way in ketosis, even if you do one day of no sugar / carbs under 20g you can see a huge difference right away!!!
 

merylg

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I came to this conclusion all by myself, I tell plp my glucose system is broken, and using the fat system (ketosis) is like going from a 4 to a 7 or 8. Makes a huge difference for me, and you don't even have to go all the way in ketosis, even if you do one day of no sugar / carbs under 20g you can see a huge difference right away!!!
That’s great it works for you! Might not work if someone’s fat metabolism system is broken or protein metabolism system is broken... I guess one would soon find out!

I had some success with HCG diet so I know I can get ‘fat metabolism’ to work better. However I could not manage the intermittent fasting needed to maintain the weightloss afterwards.

I’ve just found out through WGS that I might have a problem with SLC16A1 gene which encodes a Monocarboxylase Transporter (MCT1). It can lead to Hyperinsulinemic hypoglycemia familial 7.

During anaerobic exercise (high intensity or weights) which I could never sustain for long anyway, insulin is inappropriately secreted... glucose is diverted from blood to muscle & brain is deprived of glucose... if I’m understanding it properly....???

This is supposedly a rare condition but I wonder if anyone else here might have this problem? I’m also wondering if Ron has looked into this?

More than likely he has. It would certainly explain ‘brain fog’ & worse as in brain damage. It also would explain exercise intolerance of a certain kind.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4815176/
Edited: to break up text
 
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