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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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reactive hypoglycemia -- causes and treatments?

Discussion in 'Gastrointestinal and Urinary' started by sensing progress, May 31, 2010.

  1. sensing progress

    sensing progress Senior Member

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    Any idea why is it so common in ME/CFS patients? And are there any effective ways of treating it besides diet modification?
  2. Countrygirl

    Countrygirl Senior Member

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    =datregy;87132]Any idea why is it so common in ME/CFS patients? And are there any effective ways of treating it besides diet modification?

    I found hypoglycemia to be a major problem and would become suddenly close to collapse as a result. After many years, I have solved the problem very successfully by following a very low carbohydrate diet. It miraculously and rapidly cured both my bloating problems as well as the hypoglycemic attacks. I have found no other way of keeping it under control, but by diet, I'm afraid.
  3. alex3619

    alex3619 Senior Member

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    Hi

    Dietary methods that appear to work include low carb diets and high glycemic diets with a little extra protein. Small regular meals seem to help, as does not following ultra low fat diets. In short, you have to keep the body supplied with fuel. Try to keep all fat the healthy types, especially avocados, cashews, almonds, and macadamia nuts.

    I would really like to hear what the patients on Lerner's protocol, other antivirals or ampligen can say about this. It is possible that reversing the metabolic problems due to viral attack can help with this symptom.

    The biggest problem I have with the hypoglycemic attacks is that either I forget to eat or that I don't have anything left that I can eat without cooking and I am too fatigued to cook or go shopping.

    Bye
    Alex

  4. Sasha

    Sasha Fine, thank you

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    I was able to control it through diet modification (whenever I eat carbohydrate I eat a portion of protein that is slightly bigger, as advised by a nutritionist - and vegetables also help to fill up and modulate energy use).

    Any special reason you don't want to use diet modification, datregy? It's side-effect free! It can take a little bit of getting used to but once you're used to a new pattern of eating it becomes second nature.
  5. Mithriel

    Mithriel Senior Member

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    Since becoming diabetic, I have been reading up on how sugar system works.

    It turns out that what you eat is only part of it. The most important part is that the autonomic nervous system tells the liver to release sugars. (This can be a big problem for diabetics).

    Having had hypoglycaemic attacks for years and tried all the slow release fixes, low carb and nothing worked I now believe that my autonomic system, which I know to be knackered because I have no temperature control either, is not sending the right signals to my liver to release stored sugar.

    The other problem is that the brain can only use glucose while the rest of the body can use a glycogen system. We feel hypoglycaemic when the brain doesn't have enough energy to work properly. Because we probably have mitochondrial damage our systems are on a knife edge so any drop in available glucose, even a small one, can push us over the edge.

    Strangely, prozac had no effect on me except it masked the hypoglycaemia. Whereas before I would gradually become worse when I took this I would get that bit longer without symptoms but then I would suddenly collapse.

    But I think it is just another manifestation of our autonomic nervous system dysfunction.

    Mithriel
  6. Sasha

    Sasha Fine, thank you

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    That's interesting, Mithriel - reading what you've said, I think my earlier post was a bit naive! That's the glory of the forum, I suppose - what one of us doesn't know, someone else will!
  7. Mithriel

    Mithriel Senior Member

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    Not naive at all Sasha. I have had the problem for decades but just found out this year. The emphasis is always on the diet side of the system, which helps a lot of things, but is not the whole story.

    I am the sort of person who needs to eat regularly. Over the years, I came to realise that my very lean built husband was not less greedy than me when he forgot about eating - he releases glucose from his liver very efficiently so he stops being hungry while I collapse.

    I believe that there are genetic differences in our ability to do this. It would explain why some people go off food when they are distressed and others need to eat more.

    When you add in the complication of ME/CFS it would explain why hypoglycaemia is so prevalent in some of us.

    Unfortunately it is often written off as panic attacks.

    Though.... panic attacks happen at random while a phobia happens in specific circumstances. Does anyone know the name for having a phobia of "fifteen minutes before a meal is due"? :Retro smile:

    Mithriel
  8. Athene

    Athene Never give up

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    Here's what I've tried:

    Atkins diet (phase 1) which is extremely low in carbohydrates: This works amazingly well. You feel terrible for the first 4 days or so then suddenly feel great. You cannot cheat even with one crumb of bread. It only works if you give up caffeine as well. After about 7 months I started going nuts becuse you have to restrict many vegetables and have no fruit at all, which means you must take heaps of nutritional supplements. I am not convinced this can ever be as good as a varied diet.

    Chromium: High dose supplement (I'm using the Kirkman Labs one). This is necessary for the production of "glucose tolerance factor". Some injecting diabetics can stop insulin once they start this so it is proven to be very effective and apparently over 40 percent of the population is deficient in it.
    Lipoic Acid: Jarrow quick and timed release supplement - this keeps a constant blood saturation of the cofactor. It is an antioxidant which also controls the blood glucose level.

    I am taking both these supplements and eat carbs freely, though I try to limit simple sugars as they upset my tummy. The effect of the supplements has been amazing and I am not getting lows and highs at all these days, even when taking erythromycin which usually gives me terrible blood sugar crashes that cause tremors.
  9. alex3619

    alex3619 Senior Member

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    Hi

    Once you get into sugar metabolism, and its regulation, you are in a complex web of science and opinion in which nearly a century of research has failed to give a cause, merely associations and risk factors. We do know proximate causes and mechanisms (this causes that type of stuff) but not enough to really understand what is going on.

    Let me give you an example of the complexity: we know CFS is a high oxidative stress disorder. This attacks omega 3 fatty acids. We also know that we benefit from omega 3s, in both brain and immune function. How many people are aware that the omega 3 content of the nuclear membrane inside cells regulates, in part, the insulin response? That omega 6s do too, although in CFS we are often deficient both through poor synthesis of omega 6 substrates for its hormone derivatives, and probable hyperutilization to make inflammatory hormones?

    There are also indications that the cleaved RnaseL fragments often found in CFS might have metabolic effects. Then we have all the cytokines, many of which are still under investigation. I have my opinions, based on more than 15 years of interest in this area, but I have to admit I don't understand it. Then, I also think that nobody else does either. This is very very very complex.

    I would like to say that I think many cases of type 2 diabetes found in CFS are not caused by the standard problems, they follow different biochemical rules, show up differently in lab results, and are even more misunderstood than regular type 2 diables.

    I am a type 2 diabetic. I have read hundreds of research articles on this (most of which are biased) but I do think one thing: the control systems (metabolic, hormone and neurological) that regulate this metabolism need a lot more research. My suspicion is that we need to follow the hormones, as well as the epigenetics (which genes are switched on or off), specifically for CFS and not generally.

    This is one area in which I think we can only use the science as a rough guide, which is why I am always interested in reading about people's practical experience. Science does have its limitations, particularly in areas that attract no funding. The combined wisdom of the neuroimmune disorder community will probably be our best guide.

    Bye
    Alex
  10. Athene

    Athene Never give up

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    Alex,
    Wow, a very complex business!
    Do you know any useful links that could give beginners at this a reasonable overview, or maybe a few of the most useful research articles?
    I've been reading about the "Lyme diet" which is recommended by a number of Lyme doctors for long term patients, which is basically a modified Atkins type diet, so I am curious about how that works. I wonder if XMRV could do something similar to Borrelia in the body - they both seem able to modify the immune system.
    Lots of wondering in a chasm of ignorance...
  11. serenity

    serenity Senior Member

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    ive been worried a lot about diet lately. mostly my concern is my weight, i was very slender & the docs told me i had to eat so i did & i've put on 10 lbs. i know it's not much but i'm vain, so i'll begin by admitting my main concern is weight loss. but that said, i tried a nearly vegan organic diet for a month & i did feel better. when it didn't produce any weight loss i threw it out & got sick the first time i ate fajitas.
    i know nothing about diet, but when i used to not eat all day - yes that is how i stayed thin - i would get quite ill & have no energy & i swear i had no idea it was because i wans't eating.
    so yeh, eat more feel better but po'ed about the weight gain. can anyone explain to me why diet matters for us, & what i might do to feel better & stay slim? or am i hoping for the impossible here.
  12. Stuart

    Stuart Senior Member

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    There is some good info on Reactive Hypoglycemia related to Fibromyalgia and Chronic Myofacial Pain by Devin Starlanyl. ME/CFS patients are similar.

    Devin Starlanyl on Reactive Hypoglycemia, Insulin Resistance, and Fibromyalgia
    www.prohealth.com/library/showarticle.cfm?libid=8360



    Reactive Hypoglycemia (RHG), Insulin Resistance: FMS & CMP Perpetuating Factor
    by Devin J. Starlanyl
    Adapted From "Fibromyalgia and Myofascial Pain: A Survival Manual,
    edition 2", 2001, Starlanyl and Copeland.
    http://homepages.sover.net/~devstar/hypogly.pdf
  13. serenity

    serenity Senior Member

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    i think i may take this page to my doc, thanks Stuart
  14. sensing progress

    sensing progress Senior Member

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    I do use a modified ("paleo") diet, but I find it particularly hard to follow when I'm travelling or visiting family/friends. They can only accomodoate you so much and inevitably I get off it and find myself in a crash with hypoglycemia a big contributing factor.

    I've tried high dose Chromium and Niacinamide as recommended by Dr. Myhill but did not find either of any help, unfortunately.
  15. sensing progress

    sensing progress Senior Member

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    What dose of Chromium are you taking, Athene? How long were you on it before you noticed improvement?
  16. alex3619

    alex3619 Senior Member

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    suggestions for type 2 diabetes in ME and CFS

    Hi Athene

    I'll have a poke around and come up with some suggestions, including a few books written for the general audience, but real life is taking most of my energy this week. Basically though, you need to read widely and then realize that ME and CFS might be different anyway. Practical solutions are the go here, not science, and I say that despite the fact that I am a very big fan of good science (though not the other kind). There are also numerous substances that help, mostly vitamins etc, but even some herbs. This a very much a case of try it and see if it works, with dietary interventions like the ones described on this thread at the top of the list.

    For type 2 diabetes I like chromium picolinate, lipoic acid and CoQ10 for those over 40, but for younger patients I would drop the chromium picolinate due to the remote risk of liver cancer. For older patients the antiaging properties of chromium picolinate probably outweigh the risks, but there is no hard science that can give us the answers. Last I looked into this, the liver cancer possibility was only a maybe, and only shown in hamsters or something, not humans. The antiaging properties, on the other hand, have been researched in rats. Humans are known to get better sugar/insulin readings on this supplement though. When I was last on it I had more energy and lost a stack of excess weight due to higher metabolism.

    I also favour taking omega 3 supplements and using locally grown extra virgin olive oil in cooking and salads. The debate is still going on omega 6 supplements as far as I am concerned.

    For general diet, eat more protein and less carbs, in smaller amounts but more often. Carbs should be low glycemic where possible. Fats are good, if they are healthy fats and not in excess. You then have to decide between a high protein diet with low carbs, and a more balanced approach. I favour the more balanced approach because of the better antioxidant supply you can get from fruit and less metabolic stress, but either approach seems to work. These dietary strategies should also work for reactive hypoglycemia.

    Personally, I think if we can finally treat the viral and other infections using the latest and ongoing breakthroughs, most ME and CFS patients with type 2 diabetes will be a whole lot better very quickly. This is because mitochondrial function will improve, and hormonal effects of ME and CFS that might drive insulin resistance should be eliminated. Only those who have progressed to extreme type 2 diabetes and are on insulin may not be helped, but even there I think they might find things a little easier - but I don't know any CFS patients that far along the diabetes progression.

    Bye
    Alex

  17. Mithriel

    Mithriel Senior Member

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    This link here http://www.phlaunt.com/diabetes/14046739.php has links to some interesting papers on diabetes.

    I can't find the direct link to the papers but some very large scale studies in France and Scandinavia have found that diabetes is actually a long term effect of a particular genetic make up which handles the glucose system differently.

    A combination of that genetic type and ME/CFS may cause specific problems especially with hypoglycaemia and weight gain.

    I cannot function without carbohydrates so I cannot tolerate an Atkins type diet. I think it is because I can't release enough glucose from my liver to power my brain so I have to eat them. This has affected my weight but I had no choice if I was going to cope with my family.

    Mithriel
  18. Athene

    Athene Never give up

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    Thank you everyone for the links and useful info.

    I am taking 200 microgrammes of chromium a day. I started the chromium and Lipoic acid about the same times, so I honestly don't know which of the two is making the most difference. I started noticing a difference in a matter of days, by 2 weeks there was a very definite improvement.

    Mithriel, what you describe is the situation I was in. I needed sugar rushes incessantly and they wore off really fast. It was as if my body could not get the glucose out of storage once it had been laid down. The supplements have helped a lot with that.

    To be honest, the most effective solution was the Atkins diet, which reduces total carb consumption to under 4 percent of food intake. This makes your body produce ketones to burn for energy instead of burning glucose - they are the two energy pathways. Ketones utilise fat instead of glycogen, and they use your own stored body fat as well as the fat and oil you eat, Serenity, so you do lose all your surplus flab, Serenity! The best thing is that the lean muscle stays and only the fat goes.

    When I did this diet it took me into the best remission I have had since getting this illness 25 yers ago. I got up to 70 percent of my original functionality, maybe more. I just wish I were intelligent enough to understand this business of mitochondrial dysfunction, because I have always wondered if the ketone source of energy is a way of circumventing that problem and getting a more steady and reliable/usable source of energy.

    BTW if anyone wants to try the Atkins diet, you need to get up and running just after your period finishes, not during, because your blood sugar will go a bit haywire at that time of the month.
  19. Adam

    Adam *****

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    I have had Hypoglaecemic attacks (always around 4 - 5pm) on and off for around 20 years. I have been tested (in-patient starvation thingy test) for diabetes. Not diabetic. I am lactose intolerant in a big way. I have Gilbert's syndrome (minor herditary liver dysfunction) and IBS, constantly for last 10 years since I became lactose intolerant (hospital tested with hydrogen breath test)...and yet, the Hypoglacemia comes and goes with no apparent pattern to it. And my diet has not changed at all in the past 15 years or so.

    It's like everything else with this damn condition of ours, it is almost impossible to pin anything down.

    Another for instance (off topic somewhat) is Psoriasis. I get it on my hands and feet. It comes it goes. When I started with it 25 years ago I used betnovate. After a time I realised it did not matter whether I used it or not. Used it - it came and went. Didn't use it - it came and went.

    I guess what I am saying is IMO being your own doctor is extremely difficult. Either self-diagnosis or self healing. I don't BTW, blame anyone for trying when our doctors fail us all the time.

    That's why XMRV is it for me. I came down with CFS/ME in the accepted viral onset sense in 1996. However my IBS/Psoriasis began about 10 years before that. If I do test positive for XMRV I will think I got at least as early as 1986 and probably before that.

    It's XMRV or nothing right now. I don't do self-healing. I don't want to be my own doctor. I want medicine please. Like you used to get when you were a kid and you went to the doctor and came home with something in a bottle!
  20. HopingSince88

    HopingSince88 Senior Member

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    The following thread talks about a study showing that sleep deprivation = insulin resistance

    http://www.forums.aboutmecfs.org/sh...onic-Fatigue-Syndrome&highlight=sleep insulin


    The following thread talks about a study showing reduced heart rate = sleep deprivation

    http://www.forums.aboutmecfs.org/sh...ariability-predicts-poor-sleep-quality-in-CFS


    ME/CFS have issues with left ventricle as well as low blood volume. I am thinking both or either of these could cause a reduced heart rate.

    It almost appears to me that fixing the blood volume and heart problems will have a positive impact on sleep and ultimately insulin production.

    Alex-thanks for sharing your recommendations for supplementation in this regard. I am going to try some of them...adding one at a time to see what helps.

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