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  1. #61
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    Quote Originally Posted by TARNIP View Post
    The highlighted part above is pretty much how my doctor explained it to me. It will always be in your system and will come up on blood tests but unless your immune system is under stress it will stay dormant, if not, you will relapse and begin to get symptoms again when the disease becomes active. The B12 injections were integral in my recovery. If I hadn't have had them I shudder to think where I might be today. The thing with CFS is I don't think you ever get 'truly' better and I think I have finally come to a point in my life of finally realizing this (I contracted it when I was 15 years old and I am now 34, so better late than never I suppose!) You can get to a point where it is manageable but I know I will never feel 'normal' again. It's a real balancing act with regards to supplements, nutrition, sleep, exercise and the biggest one for me is stress management.
    I really need to get myself some D-Ribose if it makes you feel like that! Even if it does only last for a short while...........I sleep around 8-9 hours a night and still wake up feeling like I've had none! I take a whole host of supplements but the ones that I find help me the most are L-Glutamine, CoEnzyme Q10 and a high strength pure cod liver oil. I take quite alot of supplements but these ones are the ones I have found to be the most beneficial. I also try to take my supplements as powders and liquids instead of tablets and capsules as I find they absorb far more easily and I get the benefits much sooner.
    Interesting. I know that I am susceptible to that family of viruses, because epstein-barr is in the same family as the cold-sore virus and I've gotten those since I was ~10 yrs old. I wonder if it's just always there, making me feel mediocre most days but downright awful on any days when my immune system is under stress. Like today I feel just terrible, I got 7 hours of sleep but I'd swear it feels like it was only 3. Pounding headache, sore throat, ugh.

    Don't get too excited about the d-ribose ... I mean, just know when you try it that the effects may decrease greatly after the first two weeks or so. It was incredibly disappointing for me because I felt so awesome at first.

    I started taking 1 tsp of a very high-quality fermented cod liver oil about 2 weeks ago. I will have to ask the naturopath I am seeing about the B12 shots, and whether she would recommend L-Glutamine or CoQ10 for me. At this point I know I'll never feel great, but I would settle for just ok. Feeling like I'm coming down with the flu at least 50% of my waking hours is just miserable!

  2. #62
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    It sounds like immune system problems along with some endocrine problems to me. Also, do you have hypermobile joints? They can cause excess fatigue as your muscles have to work harder at a given movement so they need more glycogen than average.

    I understand what you're going through. Conventional medicine has failed me miserably, and a friend of mine too who has had CFS for over a decade now.

    My immune system was weakened by amalgam fillings, vaccinations and various food intolerances. So I've eliminated those with good results, as well as eating a low histamine diet. I've had various body clock issues during my life including chronic insomnia as a child and seasonal affective disorder in which I believe histamine is a factor.

    Causes of fatigue are clearly often very multifactorial, hence the difficulty of nailing down the causes.

    Yoga, hot/cold pulsating showers and body brushing help a sluggish lymphatic system get moving, and that can be a factor in a weak immune system. Also an ioniser might be something to try to raise your energy levels.

    Anyway there's a few more suggestions for you to investigate.
    Last edited by paleo-bunny; 06-26-2012 at 09:56 AM. Reason: grammar
    F 5 ft 3. HW: 196 lbs. Primal SW (May 2011): 182 lbs (42% BF)... W June '12: 160 lbs (29% BF) (UK size 12, US size 8). GW: ~24% BF - have ditched the scales til I fit into a pair of UK size 10 bootcut jeans. Currently aligning towards 'The Perfect Health Diet' having swapped some fat for potatoes.

  3. #63
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    Quote Originally Posted by paleo-bunny View Post
    It sounds like immune system problems along with some endocrine problems to me. Also, do you have hypermobile joints? They can cause excess fatigue as your muscles have to work harder at a given movement so they need more glycogen than average.

    I understand what you're going through. Conventional medicine has failed me miserably, and a friend of mine too who has had CFS for over a decade now.

    My immune system was weakened by amalgam fillings, vaccinations and various food intolerances. So I've eliminated those with good results, as well as eating a low histamine diet. I've had various body clock issues during my life including chronic insomnia as a child and seasonal affective disorder in which I believe histamine is a factor.

    Causes of fatigue are clearly often very multifactorial, hence the difficulty of nailing down the causes.

    Yoga, hot/cold pulsating showers and body brushing help a sluggish lymphatic system get moving, and that can be a factor in a weak immune system. Also an ioniser might be something to try to raise your energy levels.

    Anyway there's a few more suggestions for you to investigate.
    I do have hypermobile joints, although I had never heard that term before! I had to google it but yes my knees bend backward and my fingers do weird things. It's actually kind of annoying because I have to make a special effort to stand with my legs straight and not bent backward (which tends to freak people out). I had no idea it could contribute to fatigue though!

    How did you identify what to work on? Just trial-and-error, or did you find a non-conventional doctor to work with? I've felt very disappointed in the doctors I've seen before, but the naturopath doctor I just started going to actually listens to me and believes me which is a huge change for the better.

    I'll have to google body brushing. As for yoga, I wonder if I could just get a DVD and try to learn that way. It definitely couldn't hurt, that's for sure.

  4. #64
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    Quote Originally Posted by KimInGA View Post
    I do have hypermobile joints, although I had never heard that term before! I had to google it but yes my knees bend backward and my fingers do weird things. It's actually kind of annoying because I have to make a special effort to stand with my legs straight and not bent backward (which tends to freak people out). I had no idea it could contribute to fatigue though!

    How did you identify what to work on? Just trial-and-error, or did you find a non-conventional doctor to work with? I've felt very disappointed in the doctors I've seen before, but the naturopath doctor I just started going to actually listens to me and believes me which is a huge change for the better.

    I'll have to google body brushing. As for yoga, I wonder if I could just get a DVD and try to learn that way. It definitely couldn't hurt, that's for sure.
    Oh wow! I had a hunch we had a few things in common. I have joint hypermobility but have only got onto that as a wider syndrome recently - after horsewoman posted a link to an article about it. My knees used to bend backwards, especially when I used to run. It's best to avoid doing much jogging or running. It's fine to do a bit of sprinting provided you are not very overweight. When you bend forward to touch the floor (I'm guessing you can get your hands flat on the floor here like me), always bend your knees very slightly forward. By giving more resistance at your knees this will help more with spine flexibility which is is what that stretch is designed to improve. Doing this has strengthened my knees a lot and they don't bend backwards any more.

    I consulted a private consultant in complementary medicine a few years ago who is a fully trained doctor and very eminent in his field. He gave me a few leads such as sensitivity to yeasts and molds. I think that's down to histamine, but he didn't identify that at the time. Pretty early on he asked me if I had mercury fillings but he didn't pursue that ... I guess he might have done had I paid for more consultations. The major problems for me were chronic non-allergic rhinitis (which didn't respond to high strength steroids or anti-histamines) and IBS. Plus low blood pressure and dizziness.

    I've worked out the rest through my own research over a few years. I'm a biochemistry graduate so that has helped.

    Body brushing involves lightly brushing your skin away from your heart in problem areas. I had a consultation with a naturopath nutritionist last year while I was at a health farm. She identified problem areas where my lymphatic system is slow to drain. She is a layperson who cured herself of chronic fatigue and IBS through her own research (she was laid off work for a year - and changed career from policewoman. A very exciting person to meet and chat to as we had a lot of experiences in common and similar opinions on various things. Also she used to work quite close to where I live. Unfortunately she now lives too far away for me to consult her again.

    It's been a long, slow journey for me.

    So regarding yoga as you are hypermobile you should only do the simple symmetrical strength-building poses that promote flexibility of the spine (provided you have no problems there). It's good for relaxation and mindfullness. You may find that elementary pilates exercises are better for building core strength.
    F 5 ft 3. HW: 196 lbs. Primal SW (May 2011): 182 lbs (42% BF)... W June '12: 160 lbs (29% BF) (UK size 12, US size 8). GW: ~24% BF - have ditched the scales til I fit into a pair of UK size 10 bootcut jeans. Currently aligning towards 'The Perfect Health Diet' having swapped some fat for potatoes.

  5. #65
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    Quote Originally Posted by PrimalSexyCat View Post
    Just a suggestion but might you have a issue with eggs or another food sensitivy. Do you eat eggs ever day? The reason I am asking is I just found out I have issue with nightshade plants and nuts and eggs. Stopped eating eggs and tomatoes and I lost 5 pounds in one week and my energy is through the roof now. I wouldn't have believed it until I did the elimanation diet
    I do usually eat eggs every day, which is more than I used to eat them (prior to switching to a primal diet). I am going to try a week without them. Nothing to lose, right? I just subbed some greek yogurt with cacao powder mixed in this morning for my normal scrambled eggs. I've already tried eliminating dairy without seeing any changes so I know I'm fine with it. Was a week enough for you to notice a difference?

    I'll try eliminating nightshades another week, and nuts another week after that. I don't want to confuse things by making two changes at the same time.

  6. #66
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    Quote Originally Posted by paleo-bunny View Post
    Oh wow! I had a hunch we had a few things in common. I have joint hypermobility but have only got onto that as a wider syndrome recently - after horsewoman posted a link to an article about it. My knees used to bend backwards, especially when I used to run. It's best to avoid doing much jogging or running. It's fine to do a bit of sprinting provided you are not very overweight. When you bend forward to touch the floor (I'm guessing you can get your hands flat on the floor here like me), always bend your knees very slightly forward. By giving more resistance at your knees this will help more with spine flexibility which is is what that stretch is designed to improve. Doing this has strengthened my knees a lot and they don't bend backwards any more.

    I consulted a private consultant in complementary medicine a few years ago who is a fully trained doctor and very eminent in his field. He gave me a few leads such as sensitivity to yeasts and molds. I think that's down to histamine, but he didn't identify that at the time. Pretty early on he asked me if I had mercury fillings but he didn't pursue that ... I guess he might have done had I paid for more consultations. The major problems for me were chronic non-allergic rhinitis (which didn't respond to high strength steroids or anti-histamines) and IBS. Plus low blood pressure and dizziness.

    I've worked out the rest through my own research over a few years. I'm a biochemistry graduate so that has helped.

    Body brushing involves lightly brushing your skin away from your heart in problem areas. I had a consultation with a naturopath nutritionist last year while I was at a health farm. She identified problem areas where my lymphatic system is slow to drain. She is a layperson who cured herself of chronic fatigue and IBS through her own research (she was laid off work for a year - and changed career from policewoman. A very exciting person to meet and chat to as we had a lot of experiences in common and similar opinions on various things. Also she used to work quite close to where I live. Unfortunately she now lives too far away for me to consult her again.

    It's been a long, slow journey for me.

    So regarding yoga as you are hypermobile you should only do the simple symmetrical strength-building poses that promote flexibility of the spine (provided you have no problems there). It's good for relaxation and mindfullness. You may find that elementary pilates exercises are better for building core strength.
    Yes I'd already come to the conclusion that jogging wasn't good for me. I have always had a lot of joint pain when I jog, particularly my ankles. Plus I would get shin splints that just got worse and worse. People always told me to just run through it, "no pain no gain" kind of thing. I kept that up and ended up with a stress fracture that nearly cracked the ball joint clean off one of my hips! A little more and I would've had an artificial hip at the ripe ol' age of 16.

    I will definitely try the stretch you recommended, keeping my knees slightly bent. I sure would like to not have my knees bend backwards anymore!

    I have terrible rhinitis too, almost constant runny AND stuffy nose at the same time (how is that even possible?!). It's miserable. I'm not terribly allergic to any one thing, just a little bit to everything, so I've been told by allergy doctors that shots wouldn't be any big help to me. I did get surgery to correct a minor deviated septum plus do a turbinate reduction and remove some polyps (from a mold sensitivity I guess), and that helped a good bit with the stuffiness. I still go through about 3 tissues an hour though. No medications have ever made much of a difference.

    And I have low blood pressure too! Not dizzyness too terribly often, although I did get a really bad ear infection 2 years ago that left me mostly deaf in one ear so I still have some residual balance issues from that. Nothing too terrible but I do run into door frames on a somewhat regular basis.

    I'm gonna mention the body brushing the next time I see my naturopath. I think she is probably familiar with it so maybe she could help me identify problem areas.

    How funny to find someone else that has so many similar symptoms!! I was starting to feel like a hypochondriac, and I'm pretty sure that's what the western doctors I've visited think too. It's annoying because I'm really not a complainer, in fact my family has no idea about any of this because I never say anything. But with so many of the symptoms bothering me nearly every day I feel like I have to find an answer. I just don't want to live like this for the next 50 or 60 years! (The women in my family live into their 90's usually!)

  7. #67
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    Quote Originally Posted by KimInGA View Post
    I do usually eat eggs every day, which is more than I used to eat them (prior to switching to a primal diet). I am going to try a week without them. Nothing to lose, right? I just subbed some greek yogurt with cacao powder mixed in this morning for my normal scrambled eggs. I've already tried eliminating dairy without seeing any changes so I know I'm fine with it. Was a week enough for you to notice a difference?

    I'll try eliminating nightshades another week, and nuts another week after that. I don't want to confuse things by making two changes at the same time.
    Eggs are very high in polyunsaturated fatty acids (PUFAs) which can have some metabolically inhibiting effects due to their tendency to suppress the thyroid and therefore overall metabolism. I have reduced to a few per week. Cooking them in coconut oil and/or adding a CO to your diet is an option.

  8. #68
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    Quote Originally Posted by KimInGA View Post
    Yes I'd already come to the conclusion that jogging wasn't good for me. I have always had a lot of joint pain when I jog, particularly my ankles. Plus I would get shin splints that just got worse and worse. People always told me to just run through it, "no pain no gain" kind of thing. I kept that up and ended up with a stress fracture that nearly cracked the ball joint clean off one of my hips! A little more and I would've had an artificial hip at the ripe ol' age of 16.

    I will definitely try the stretch you recommended, keeping my knees slightly bent. I sure would like to not have my knees bend backwards anymore!

    I have terrible rhinitis too, almost constant runny AND stuffy nose at the same time (how is that even possible?!). It's miserable. I'm not terribly allergic to any one thing, just a little bit to everything, so I've been told by allergy doctors that shots wouldn't be any big help to me. I did get surgery to correct a minor deviated septum plus do a turbinate reduction and remove some polyps (from a mold sensitivity I guess), and that helped a good bit with the stuffiness. I still go through about 3 tissues an hour though. No medications have ever made much of a difference.

    And I have low blood pressure too! Not dizzyness too terribly often, although I did get a really bad ear infection 2 years ago that left me mostly deaf in one ear so I still have some residual balance issues from that. Nothing too terrible but I do run into door frames on a somewhat regular basis.

    I'm gonna mention the body brushing the next time I see my naturopath. I think she is probably familiar with it so maybe she could help me identify problem areas.

    How funny to find someone else that has so many similar symptoms!! I was starting to feel like a hypochondriac, and I'm pretty sure that's what the western doctors I've visited think too. It's annoying because I'm really not a complainer, in fact my family has no idea about any of this because I never say anything. But with so many of the symptoms bothering me nearly every day I feel like I have to find an answer. I just don't want to live like this for the next 50 or 60 years! (The women in my family live into their 90's usually!)
    Wow! I'm labelled a hypochrondriac too and I can understand why other people think that about me.

    I recommend that you look up histamine intolerance. It causes pseudo-allergic symptoms. There seems to be an association with body clock disturbances and hypermobile joints.

    It's the men in my family who live into their 90's more commonly.

    Try taking a quercetin supplement - it's a natural anti-histamine. I just eat a load of red onions for it at the moment. Caffeine is also an effective natural anti-histamine.

    And up your carb intake - you should be eating in the moderate zone, 100-200 g at least. Many women do best on that, regardless of other factors.

    Do your ankles roll outwards or inwards? Mine roll outwards and go spastic after about 40 mins of ice-skating. My joint problems have got much worse as I have aged and I have also identified that they peak during spring through to early summer.
    F 5 ft 3. HW: 196 lbs. Primal SW (May 2011): 182 lbs (42% BF)... W June '12: 160 lbs (29% BF) (UK size 12, US size 8). GW: ~24% BF - have ditched the scales til I fit into a pair of UK size 10 bootcut jeans. Currently aligning towards 'The Perfect Health Diet' having swapped some fat for potatoes.

  9. #69
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    I noticed within a week but I cant tell you if it was the tomatoes or eggs that did it. but energy was defintly up, elimanating alot of food you eat all the time at once was to hard for me lol thats why I just started with the eggs and tomatoes and a couple week later cut nuts and peppers because I wasn't eating the nightshade stuff other than tomatoes and all the different peppers, but I know alot of people have more issues with eggs than some foods.

  10. #70
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    Quote Originally Posted by paleo-bunny View Post
    Wow! I'm labelled a hypochrondriac too and I can understand why other people think that about me.

    I recommend that you look up histamine intolerance. It causes pseudo-allergic symptoms. There seems to be an association with body clock disturbances and hypermobile joints.

    It's the men in my family who live into their 90's more commonly.

    Try taking a quercetin supplement - it's a natural anti-histamine. I just eat a load of red onions for it at the moment. Caffeine is also an effective natural anti-histamine.

    And up your carb intake - you should be eating in the moderate zone, 100-200 g at least. Many women do best on that, regardless of other factors.

    Do your ankles roll outwards or inwards? Mine roll outwards and go spastic after about 40 mins of ice-skating. My joint problems have got much worse as I have aged and I have also identified that they peak during spring through to early summer.
    Holy cow, I looked up histamine intolerance and I found every one of the symptoms that have been bothering me: fatigue, runny nose, headaches, sleep disorders, low blood pressure, nausea, bloating, constipation. It would make perfect sense too, because I've felt like the symptoms were always there but got WORSE after switching to a primal diet. Since I replaced the ~30% of my diet that used to be grains with primal foods, many of which are on the high-histamine list (bacon, aged cheese, nuts, many fruits/veggies), this theory makes perfect sense.

    I started furiously googling and it seems like every list of high-histamine foods is different! They all seem to agree on alcohol, smoked/canned/processed fish/meat, sauerkraut, aged cheeses, balsamic or red wine vinegar, aged soy products, chocolate, peanuts, walnuts, strawberries, citrus, tomatoes, eggplant, spinach, avocado, mushrooms, canned/prepared veggies, coffee and black tea. However beyond that it is a crapshoot. Some list all berries, yogurt, spices, chicken, coconut, all nuts, pork, eggs, shellfish, milk or dry-aged beef. I wish I could find a list of the actual amount of histamine in each, because I don't know what I'd be left with if I cut out every single thing I found on every high-histamine list. The only things I can think of are butter, coconut oil and certain few fruits/veggies!

    I did order a quercetin supplement though ...

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