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? for those who feel "totally healthy" out of the blue

Discussion in 'General Treatment' started by xchocoholic, Nov 4, 2009.

  1. xchocoholic

    xchocoholic Senior Member

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    Can I ask you all a question ...

    Today I was having CFS fatigue symptoms, as in my body felt heavy and my heart felt like it was struggling to keep up. I was getting winded for no apparent reason too. I'd had blood drawn on Monday so I attributed it to that.

    During the day, I rested, ate well and took several supplements including aminos, CoQ10, Kreb's cycle chelates, etc but still felt this way. I got a few things done but it was a struggle.

    So at 5:30 pm I drank an EmergenC and found my energy again. :D I've been doing housework, including vacuuming, bathing the dogs, mopping, cleaning a bathroom, etc etc since then and I haven't gotten tired yet. I feel completely healthy ... :D

    This has happened quite a few times in the last 3 years but never lasts. 3 weeks was my previous record for this and happened one year after going on this diet and before I was able to digest supplements. Prior to going on this diet, I never ever felt healthy for even a few minutes from 1990 on ...

    So can anyone relate to this ? Why is it that certain supplements or changes in my diet, will take away my disabling CFS/OI symptoms ? What takes away your CFS symptoms ? Maybe we can come up with a list ...

    thanks ... Marcia

    ETA .. I am sleepy now, so I'm calling it a day. I was really worried that the Emergenc was going to keep me up ... whew ... g nite ...

    ETA2 .. I'm still awake. lol ... I thought getting this fired up from doing all that work this late in the day might be a problem ...

    I wanted to add that I've used Emergenc at least 100 times now without getting this type of response, so that's not it. And I didn't take anything else today that I haven't taken before.

    And, that there were two other times that I felt completely healthy for more than a few hours. From the first day I started salt loading and the first time I ever tried eVAMOR alkaline water. Other than these times, it's only happened rarely and not for more than a few hours a day ... Most of my mornings have been great lately .. KOW ...

    I was wondering too if those of you who work, feel "totally healthy" during the day but are too tired to function at night. Those who are disabled / housebound or bedridden may be able to relate to this best.

    Experts talk about CFS being from mitochondria problems, or low blood volume, or detox problems, candida, H2S, etc etc but what do we really know about this condition ? Why would someone like me who normally feels fatigued after 20 minutes of exertion 95% of the time suddenly feel GREAT and not get the least bit winded or fatigued for hours or days on end ? It can't be candida, because it can't clear up that quickly. Low blood volume can't rectify itself that quickly either although that was certainly an issue yesterday. I'm full of gas from eating cauliflower, squash and zuchini for dinner, so H2S didn't stop me. Which leaves mitochondria dysfunction or detoxification ... and maybe these two are one in the same .. Heck if I know ...

    Time to try to get to sleep ... again ...
     
  2. Victoria

    Victoria Senior Member

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    Apologies for getting so personal & straight to the point, xchocoholic,
    but did you have a strong bowel movement between fatigue & suddenly feeling healthy? :eek:

    I have noticed that a complete emptying of the bowels brings me to increased energy in seconds - literally - every single time.

    (hence my theory that diet is part of my wellness, or lack thereof - getting rid of whatever is sitting in my digestive tract, colon & bowel makes for a big difference).

    Victoria :)
     
  3. Nielk

    Nielk

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    I have been very sick for the past seven years.
    But, three years ago I had an episode happen and it resulted
    in me feeling completely well for over three weeks.

    I had tried a new medication for sleep called xyrem. It worked well for a few
    days. It put me in a deep refreshed sleep. But, by the fifth day, I had a
    very strange reaction. All of a sudden, I had a manic episode where I was
    hearing things and saying strange things. This lasted for two days!!!(very scary
    to me and those around me).

    My husband right away took me to my doctor who gave me something to calm me down. (by the way I had to report this effect to the pharmaceutical company since they had never heard of such a side effect)

    But, strangely, once I came out of it, I felt like a different person. My pains were gone, my energy level came up, my headaches were gone.

    I thought I was cured. It lasted for about three weeks and then I gradually relapsed completely.

    So I think that maybe it's some mechanism in the brain that affected my change. I don't understand it and my doctor doesn't understand either.

    Can anyone relate?
    Nielk
     
  4. xchocoholic

    xchocoholic Senior Member

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    Victoria,

    I appreciate straight and to the point.:) No BM though. I know what you mean though and I've been making sure I have a BM everyday. I take probiotics, eat healthy, etc so my digestive tract is actually ok most of the time now.

    This was different from the relief I feel from having daily BM's though. I hardly ever have complete strength in my muscles and can think clearly ... :D

    I have a history of PEM so I sure hope it doesn't happen. So far so good but it normally doesn't hit for 24 + hours so I'll have to wait and see. I really need to clean this place ...

    TC ... Marcia
     
  5. xchocoholic

    xchocoholic Senior Member

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    Nielk,

    I can't relate to the xyrem reaction since most meds make me sicker. I'm not up on what xyrem does but I'd guess that it alters our nuerotransmitters somehow. This happens in several ways ... I just started being able to digest supplements and so I'm just learning about all this.

    From what I've read so far though, our brains need aminos, B's, EFAs, antioxidants ... Changing your diet to elminate food intolerances seems to help a good deal of us too.


    Sorry I can't be more help ... Marcia

    PS. Theanine calms us and allows us to think more clearly. Here's a thread I wrote on another board while trying to research aminos. It has some great links .. I have info on EFAs over there too but no time to find it right now.

    http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=3640

    TC .. Marcia
     
  6. jewel

    jewel Senior Member

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    Yes, I have had this experience, but I do not know what causes it. If I knew the correlates, I would try (obviously) to replicate the experience. I love the days or hours of being able to think clearly. But, I am not certain what brings them on nor what causes them to end... with the obvious exception of "over doing." Sometimes, for me, it seems in part related to the weather as I can be feeling relatively well, but if the wind picks up, or a low-pressure system comes in, or it gets cold, there comes the muscle pain and brain fog. It isn't that simple, however, because otherwise in dry N. Cal, I would feel well all summer. I don't, but I definitely feel better than in the winter. I haven't yet figured out how to control the weather, so this is not so helpful unless you have some tricks in that regard. I am sure diet makes a difference too. I did try going off gluten and dairy for over a year, but it did not have a clear cut effect on me. Now I have limited amounts of both, but do try to keep to a wholesome diet when I can (homemade, non-processed). I don't keep to this 100%. It may help me more emotionally, as in I feel I am being very kind and caring to myself and family when I (we) eat this way... Best of luck and am open to any other suggestions by people who are more discerning than I am re: environment, supplement, diet and clear thinking/energy. Best to you, J.
     
  7. xchocoholic

    xchocoholic Senior Member

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    jewel,

    Thanks for replying. Good to know it's happening to others too. I notice a slight difference when it's cold and cloudy / rainy but not like this. I just don't have as much motivation when it's like that but I can motivate if I have too .. so far, it looks like my pain is coming from one of the foods I'm eating. I had a major FM flare about a month ago from either too much chocolate, kombucha tea, bacon and pork. I'm experimenting again to see which it was.

    I feel like I'm beating a dead horse when I say this cause I've said it so often but when you went GFCF did you completely eliminate hidden sources of both ? :eek: Also, DoctorJ has some interesting info on glutamates which are highly concentrated in gluten, dairy, corn and soy. 4 foods that are hard to get away from unless you eat whole foods.

    Hope you feel better soon too ... X

    I wanted to come here and add that this could also have attributed to my "healthy feeling" yesterday, although I hadn't noticed this affect before when I ate this. We'll see. I just ate some more ... :D

    New Tree Ginger

    http://newtree.com/sexy.php

    Which contains Guarana ... and webmd says is being used for CFS/OI !!

    http://www.webmd.com/vitamins-suppl...tId=935&activeIngredientName=GUARANA&source=3

    The scoop on guarana ...

    http://www.guarana.com/

    I'd been resting up for several days prior to this so I know that helped too. I'm one of those who gets tired from normal everyday experiences like grocery shopping so PEM for 1 - 3 day after a few hours of running errands is my norm. When my PEM is gone and I can get off the sofa without feeling weak, I go back to having my "normal" CFS tired body / OI / muscle weakness / getting winded after being up for a few minutes or hours. It just depends.

    Headed out to test my chocolate / guarana theory ... TC ... X ;)
     
  8. Cynthia

    Cynthia Guest

    Victoria

    Do you do a cleansing method of some type? I just came from the drs office about an hr. ago, because of pain under my rib cages, especially the left side. I do have problems with constipation, have been diagnosed with IBS. I've been having this pain for a few months now, but it has gotten worse the last couple of weeks. My dr. did a physical, then said he really thought it was my IBS acting up. He said pears are a good fiber..ha, I have a pear tree, told him that I also have a apple trees, he says..actually, apples can cause the problem. So, will lay off apples, stay on the wheat bread, drink a lot, and what ever you may suggest here would be great. :confused: Thank you, Cynthia
     
  9. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    I am going to take a guess that you may have gone through a detox and that was at least part of the problem you experienced. Deep sleep is when much of the liver's work is done and when many substances needed for detox and for general wellness are produced. Growth hormone is just one example.

    My theory is that the medication gave you enough stage 4 sleep to get your detox pathways moving and that you suddenly started to move enough toxins to give you the neuro-cognitive effects you experienced. Of course, the medication may have also shifted levels of neurotransmitters and that may have been a contributing or the major causal factor. Still, I think it is possible that what you described is a detox reaction especially since you felt better for a while afterward. I know that some of my detoxes have really taken my brain for a ride.

    Peace,
    Susan - who is NOT a doctor
     
  10. August59

    August59 Daughters High School Graduation

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    Amen Victoria - I have to take a consistent, but fairly low dose of pain medication. We all know what it does and it has seemed to be much worse withh pwc's than average joe

    I've tried 4 grams of magnesium citrate before and still nothing, been on Avitiza (might have name wrong). Took this and that, then Miralax and still nothing.

    And when I say nothing, I mean nothing normal. Most of the time between 4 - 6 days in between.

    Gasteronologist talked me to get 2 ot 3 three bottles of the magnesium citrate and take every night till I go. After that I was to take 100mg. softner and a laxative on M-W-F till further notice. This has helped, but still 4 days sometimes and I can tell you with strong certainty that I will have an energy boost if I have to wait 4 days. I have however been closer to a 2 day cycle
     
  11. shrewsbury

    shrewsbury member

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    sounds awful august59.

    When my grandmother was in a seniors condo complex that had a restaurant (it's a successful chain across Canada and the US I think), stewed prunes were served with every dinner. And they worked!

    My first line of attack is via diet - prunes (and apricots) and bran flakes with psyllium. And I know some people use metemucil.

    Think it's worth a try if you haven't done so already.

    A strong remedy for me is cascara. Think you can get it in pills now. I used to buy the herbs bulk at a health food store and make a tea. It always worked. One time made it too strong - not pretty so be careful.

    if:)
     
  12. xchocoholic

    xchocoholic Senior Member

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    It still amazes me how most of us with GI symptoms have been trained by our doctors and / or family and friends just to accept or pop a pill for. I was diagnosed with IBS and it turned out that I really had celiac disease, other food intolerances and dysbiosis. Even after telling a freind of mine this, she still takes imodium everyday because her doctor told her too. :confused: How doctors get away with is a whole other gripe ...

    I didn't used to think this way, but now when I have GI symptoms, I think diet and what did I eat that could've be caused my symptoms. Once you get things working this becomes a lot easier BUT still doesn't mean you're home free. The body doesn't work that way. A virus, bacteria, mold or a hidden food intolerance can take this away in a matter of seconds. And these, unfortunately, are everywhere .. :(

    For most people, getting your digestive tract back to a "normal" mode is really simple in theory, BUT hard to maintain. Start by going on an elimination diet that includes plain chicken and fish, steamed, easy to digest veggies like peas and asparagus and pears or applesauce. Do NOT eat any known food intolerances ... ZERO ... no gluten, dairy, soy, corn, eggs, shellfish, peanuts, etc etc ... I may have missed one so you may need to google elimination diet.

    This is really important because you may not realize one of these foods is damaging your body until your symptoms become severe. I didn't test positive for dairy allergies but my doc said that my raccoon eyes from dairy means my body is trying to tell me to stay away from it. OR else ...

    Take it from someone who gets ataxia and myoclonus from gluten, I know exactly what she's talking about too. I didn't get "real" digestive problems from gluten until June 2005. As a matter of fact, up until 2005, I would drink Ensure or Boost and eat gluten filled bread when my digestive tract bothered me too much to eat anything else. And it worked like a charm ...

    The other reason you want to eliminate all common food allergens is that food allergens cause our bodies to create cytokines. And the more cytokines you can reduce, the better chance your body has of healing itself.

    The trick is to figure out which foods your body can or can't handle. Not everyone can eat applesauce or chicken ... Everyones enzymes and bacteria are slightly different and won't allow us to eat certain foods. Most of us do however have common allergens, gluten, dairy, soy, corn, etc since these are rampant in our diets. So eat what you can that keeps your digestive tract calm and moving properly ... REMEMBER, this is only temporary. Once you've gotten things under control you can begin to add foods back in slowly. Just probably not the common allergens.

    We all like foods that make us feel good emotionally but aren't necessary good for our digestive tracts or our immune systems. I love a good rare beef steak and typically eat too much of this while it's still hot ... BUT I also know that my digestive tract just can't handle this much beef and I'll be paying for it with gas and cramping for a couple of days until it gets out of my digestive tract. Betaine HCL can help with this but not enough if I've seriously overdone it.

    One trick I learned that works really well for constipation is more healthy fats in the diet. Supplements don't work as well as the actual oil. Take a tbsp of coconut, flax, grapeseed oil, EVOO, etc or just add these to your foods after they are cooked. Cooking any of these oils degrades oils so they don't work as well regardless of what you may have read. Been there, done that ...

    HTH ... Marcia
     
  13. xchocoholic

    xchocoholic Senior Member

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    BTW... I don't think I said this in this thread, but as long as I'm not suffering from PEM or some other unrelated ailment like a virus or gluten exposure, I've felt totally healthy at rest since October 2007 ... :)

    It's just when I've been active for more than say 20 minutes that I start having symptoms of OI, like muscle weakness and brain fog. Part of this was from chronic hypoglycemia because eating sometimes corrects this but not all of it ... It could be that I'm not utilizing ketones properly.

    FWIW ... Dr. Myhill taught me the term "healthy at rest". I was just telling my docs that as long as I was rested and well nourished, I felt totally healthy when I was sitting or laying down. It's 20 minutes after I started to exert myself that I wasn't feeling well.

    Dr. Myhill doesn't recommend that her patients take ribose and maybe something else, I'd have to look, before they attain this level of healing. I've just been trying to figure out how to get past this state of recovery ever since ...

    And since I have a left bundle branch block, my symtpoms could just be heart related ...
     
  14. xchocoholic

    xchocoholic Senior Member

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    I have a little more hope today ...

    I've had two days of feeling completely healthy. :D I was able to run at the dog park yesterday and I felt fine. I've only been able to do this a few times in the last 20 years. Normally, my body is too shakey / weak to do anything aerobic esp running. Of course, I'm a little sore today but it was worth it.

    And today I picked up trash at the beach with my DD and normally, I'd have done well just to make it to a chair on the beach ... And that's only if I felt well enough to go to the beach.

    My latest on my sleep regime is 1 and 1/2 mg melatonin, 30 - 50 mg theanine, 50 mg 5HTP and 200 mg magnesium. I've been playing with this since June 09 and it's working even if I have myoclonus and insomnia from gluten. Cross contamination only ... I'd never eat it intentionally. This may be why I'm feeling so much better ...

    BUT ... I've also been taking my other aminos everyday and I just added in Sogar Essential aminos since it's obvious that I'm not getting or processing aminos properly ...

    I've had three other episodes of feeling "totally healthy" in the last 3 years so I'm trying not to get too excited ... Each of those experiences lasted almost 3 weeks ... BUT from 1990 - 2006 I never felt healthy so it's good news I just hope it lasts this time ...

    It's funny because there is never a feeling of being overly deconditioned when I feel totally healthy either. Like today, I didn't get winded or feel the least bit fatigued all day long ... I still feel great !! So my CFS / fatigue has got to be a bio chemical problem ...

    My doc told me several months ago that now that I can take supplements, I should start feeling better soon ...

    I hope it sticks this time ... gotta run ... X
     
  15. Marylib

    Marylib Senior Member

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    good luck, hope it lasts!

    Hi Xchocoholic,

    Some people do recover, you know. You may be recovering.
    Personally I have never had more than 2 weeks of remission, and not for a few years now. Causes of remissions: Who knows? Cause of relapse: Who knows?

    Wishing you well! You will find out if you are over-exerting soon enough so enjoy life -- maybe it will keep on like this.
     
  16. shrewsbury

    shrewsbury member

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    xchocoholic - what fantastic news. I hope the energy lasts and continues to improve! It's so exciting, but I'm imagining that you don't quite believe it too.

    I hope you enjoy every second, like running at the dog park! Must be like being a kid in a candy store (or whatever the PC expression is now) -"now, what will I do with this bit of energy?"

    islandfinn:)
     
  17. Sunday

    Sunday Senior Member

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    I'd be a little careful about using guarana. That active ingredient that gives so much energy is basically a form of caffeine. Though given the wacky body chemistry of CFSers, maybe it will work for you somehow or has some other co-ingredients that change the situation. I found it pretty rough when I tried it healthy.

    It's so interesting to hear versions of my own experience of CFS; that sometimes (it may be related to acupuncture or diet or who knows what) I get so good I can act almost as if I'm healthy - and then I hit a point where I take it too far and down the tubes I go. What causes these changes? Wouldn't we love to know?

    Something I am trying over the past month which is definitely increasing my energy level to that "almost normal" point (but also throwing up symptoms left and right, which is part of the process) are the active B12s. If you're curious, check out the B12 methylation thread, and then "The Hidden Story" subthread. This is the most hopeful information and protocol I've had so far. Theory is that CFS is B12 deficiency and that the most common forms of B12 are either in small concentrations (in food) or inactive forms we can't use or which actually impede our absorption of active B12s (most of the B12 supplements in the US, at least). Other vitamins and minerals are involved, so maybe that has something to do with the EmergenC miracle - maybe at that moment in your chemistry it triggered something?
     
  18. Marylib

    Marylib Senior Member

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    How do we know if active B12 is "throwing up symptoms" or allowing mercury to cross the blood/brain barrier?
    I have read that thread over and over and this still seems to be the big bone of contention.
     
  19. Mark

    Mark Acting CEO

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    It's always possible that something you did several hours previously has eventually had its effect. Adding in that possibility makes it almost impossible for me to be certain about any of the things that seem to suddenly, randomly, make me feel better or worse again, because every pattern I think I've found, the theory eventually breaks down again.

    That said, by treating every theory I come up with seriously and doing everything I can in terms of avoiding sensitive foods etc, gradually over many years I've got (somewhat) better. Maybe I would've got better anyway. The only medication I've ever tried was a programme of Co-Q10, D-Ribose, Magnesium, B-12, and a bunch of other stuff - about 20 pills a day - for about a year. I have recovered massively since that time, but I'm not at all convinced the supplements were the reason. In my case, I think the biggest breakthrough was identifying all environmental and food sensitivities and taking measures to avoid them.

    My main feeling on it all is that these things are very much cumulative effects and they have a threshold as well. So for example, if I start eating wheat again, I can handle that for a week or so, after which I get diarrhoea and everything starts to come back just as it was years ago. Stay off the wheat for a few days and I'm back to my previous levels. Similarly with any number of triggers I've identified. I can only stay well by strict avoidance of every trigger I've found, I'm probably avoiding loads of irrelevant stuff I could tolerate as well but re-introducing each thing takes months to feel confident it's safe. My avoidance also includes rarely leaving the house and staying in a controlled environment - maybe that's completely unnecessary too, I just don't know.

    I notice that none of the suggestions on this thread are along the environmental lines. It's made a big difference to me to realise that I may be getting sick from things I'm sitting or standing on or near to. Just moving to a different location sometimes seemed to 'switch on' or 'switch off' the whole thing.
     
  20. xchocoholic

    xchocoholic Senior Member

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    Thanks Mary, Me too ...

    I'm sorry to hear you haven't had a remission in a few years now. I gather you don't know why though. It seems a lot of us are having success by dealing with food intolerances and gut dysbiosis. Have you tried this ? I'd like to know if it's going to work in the long run or not ... TC ... X

    Thanks, islandfinn,

    "Like a kid in a candy store" is a good way to describe this. Actually, I'm calmer this time than I was the other 3 times this happened. I sure hope it lasts this time but I'm not so sure my body can maintain this ... TC ... X


    Thanks, Sunday,

    I'm going to back off the guarana today and see how I do. I'm really going to miss that chocolate though ... it's Belgium dark chocolate ... yum ...

    I think I'm ok B12 wise. I take Vessel Care from Metagenics which has the same B12 and folate that's recommended by Rich for GD-MCB. I first tried these supplements last year when a freind offered them to me and had no reaction whatsoever good or bad. I think what I've done so far has corrected most of my body's problems with detoxing itself. Evidently, removing toxins and allowing the body to heal itself works too. In Jan 09, I started being able to handle most nutritionally supportive supplements and as long as I start slowly with a minimal dose. I've added each nutrient into my regime separately though just to be careful. The only multi I take is a mineral combo. TC ... X

    Mark,

    Thanks for replying. Good to hear food intolerance avoidance is working for you too. It's great to hear others with the same illness having success here too.

    I agree with you on the environmental angle to this too. It's just that I seem to be ok in my environment ... TC ... X


    Everyone ..

    Since I started trying to heal myself back in 2005, I've recovered from most of my CFS/FM symptoms except the orthostatic intolerance (bp drop after 3 minutes upright and subsequent weakness) and PEM (1 - 3 days of being a couch potato post exertion) ... KOW ... I'm afraid though that since my "healthy" episodes have never lasted more than a few weeks, my body may be too weak to sustain this. Which is why I need to make myself rest too even though I feel great ... :rolleyes: Is this possible ? lol ...

    I didn't have any good days or remissions until 2005, so I sure hope this "totally healthy" episode lasts. There has been gradual steady improvement for me so maybe that means I'm on the right track. My integrative doctor thinks so ... only time will tell ... I'll let you all know how this goes ...

    TC ... X

    BTW. I was thinking ... I've been waking up feeling totally healthy for about a month but fading after 1 - 3 hours. At which point I've been laying down for an hour. After that, if I lay down for an hour every few hours, I feel great again for the first 20 minutes and then start to fade again (trouble thinking, etc). Since our bodies replenish our cells with nutrients during these times, especially neurotransmitters, it makes sense to me to make sure I'm getting the essential aminos ... The EmergenC is helping too though.

    Also ... The part about fading after 20 minutes .. I was told that our bodies utilize all available glucose in 20 minutes and then have to get it via our livers through glyconeogenisis (sp?). Since I start to fade after 20 minutes this means my body isn't capable of providing the necessary components to make glucose available. The fact that my blood glucose stayed below 70 the first time I tried to go low carb back in 2007 is indicative of a problem with this process.

    I've been on the Paleo / low carb diet for 2 years now because it regulates blood glucose and retrains the liver. If you google Dr. Myhill hypoglycemia she has some great info on this. She says that most of her patients have chronic hypoglycemia. I noticed that I could stand up without getting dizzy first thing in the morning within the first few months and now I can even take shower in the morning before eating anything, but apparently it takes awhile to fix this whole process. And that's if the organs involved are healthy enough to be fixed. I still feel better if I eat every 2 - 3 hours during the day.

    Anyone else experiencing this or better yet, "healthy at rest" and experiencing this ?

    gotta go ... DD is in town till tomorrow.. tc ... X
     

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