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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. Jenny

    Jenny Senior Member

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    Remission and relapse

    Feeling good out of the blue chimes with me too. Haven't a clue why.

    What I'm interested in too though is what triggers a relapse. I've had this for 27 years, but am lucky to have had long periods of being 95%. But I've had dozens of relapses, some of which have lasted up to 6 months, where I'm completely bedbound.

    I can be in a very stressful situation (for example my husband was critically ill for 3 months last year and then had a liver transplant), and still be 95%. On the other hand, I can have long periods where I feel relaxed, with everything going well, and then suddenly I'm completely slammed for months. The only pattern I can find, after all these years, is that my dangerous times are October/November and March/April. Maybe something to do with the change of seasons? But what's the mechanism?

    This is one of the hardest things for me with this illness - the huge sense of frustration and lack of control in understanding what's going on.

    Jenny
  2. xchocoholic

    xchocoholic Senior Member

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    Yikes, This is what I was afraid of ... Getting slammed out of the blue after going through all I've tried over the last 4 years ... With my luck though, I'll get hit by a bus first .. :rolleyes:

    Since your relapses appear to be seasonal, environmental allergies come to mind ... I used to think that allergies just meant a runny nose, watery eyes, sneezing but have sinced learned that they can involve various other reactions. These can vary too, because even my DD with a severe peanut allergy reacts differently at times ... I know I'm allergic to various environmental allergens but really only know that I get the "normal / runny nose, etc" reactions. Wheat causes me to have narcolepsy though ... and gluten really damages my nuero system.

    When you speak of bedbound, are you talking dysautonomia / orthostatic intolerance where you can't sit or stand for any length of time ? Or are you sickly too ? I just get orthostatic intolerance but I used to feel sickly all the time. There are different types of dysautonomia and include those caused by allergies.

    FWIW .. I'd look at getting the essential aminos for dysautonomia / orthostatic intolerance based on what I've read and experienced lately ...

    heading outside to lay in the sun ... X

    No Guarana yet today and so far so good. I could really use some chocolate though ... :rolleyes:
  3. Jenny

    Jenny Senior Member

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    Seasonal moulds and spores

    Hi xchocoholic - that's a really interesting point about seasonal allergies. I'm going to do some research into the moulds and spores that are in the air in spring and autumn. Another pattern of mine is that I'm can get remarkable immediate improvement when I go abroad to a hot and dry place, or to the mountains. Does anyone have any info on moulds and spores that are in the outside air, and what to do if they seem to worsen your illness?

    In answer to your question - when I'm bedbound its mainly that I feel too ill to do anything but curl up in bed. Severe flu-like symptoms - shivering, sweating, profound 'malaise', aching all over etc, for months on end. Also, yes, it is partly OT - I can't sit upright for any length of time.

    How lovely to be heading outside for the sun...

    Jenny
  4. xchocoholic

    xchocoholic Senior Member

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    Jenny,

    Sounds like you nailed it .. FWIW. A lot of people find releif from environmental allergies when they reduce their total allergen load by removing foods and other easy to manage allergens from their lives like dust, toxic cleaning supplies, animals, etc.

    I've also heard that bee pollen from the area you live in helps with this too. I take it everyday now .. start slowly and build up.

    I'd start there and see if it works ... Then I'd work on moving to FL ... :D

    TC ... X
  5. condra

    condra

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    Interesting what Victoria said about bowel movements.

    Often, eating a large meal will make me feel like hell, and during a bad patch, my appetite gets really low.

    Likewise, I remember the morning of my colonoscopy a couple of years ago. I had taken laxatives, and dieted for around 20 hours as far as I remember. My GI system was completely empty. Anyway, I felt great that morning, better than I had for months.

    Regarding longer periods of remission. I have had them, but was never able to nail exactly what triggered them.

    Fascinating thread.
  6. Victoria

    Victoria Senior Member

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    xchocoholic,

    I'm sure that you already know guarana is a herb used by the South American indians as a stimulant.
    It is no better or worse than caffiene.

    I did an in depth study of guarana about 18 years ago when I was conned into buying Herbalife supplements. I was told Herbalife supplements gave you energy because of the multitude of vitamins & minerals. They may well have vitamins & minerals, but in very fine print it also mentions guarana (in every supplement if I remember correctly).

    It is in many "energy" drinks here in Australia & also now being put into chocolate bars. An energy drink with guarana is the equivalent of about 6 very, very strong cups of black coffee.

    No wonder you get increased energy from the drink (or chocolate bar).

    I strongly discourage people from using it, as, like caffiene, it is addictive. (despite what the internet ads say).

    After you stop regular consumption you get withdrawal symptoms exactly the same as coffee.

    And to August59,

    I don't take any laxatives any more as I have found the perfect solution which I feel is more natural & gentle.

    For breakfast I have a cereal called Rice Flakes with Psyllium (which is made by Freedom Foods in New Zealand, but available here in Melbourne).

    I also add a tablespoon of ordinary psyllium husks (which are very light & fluffy and more importantly VERY, VERY CHEAP).

    I can't recommend this highly enough for constipation or irregular bowel habits. Of course I also eat alot of fruit, vegetable & filtered water.

    But it is the psyllium husks which are truly miraculous for me (I had severe IBS for many years). No more pain. No more irregular BM's.

    I measure some of the rice cereal (which already has some psyllium in it) into the bowl the night before. I sprinkle one tablespoon of psyllium husks (from the health food store) over the flakes, I tablespoon of freshly ground flaxseeds (for the omega 3) & generously cover with rice milk & put in the fridge overnight.

    It swells & absorbs all the milk (in fact I somtimes put more milk in it in the morning if it's a bit too chewy).

    You can prepare it in the morning but you do need to drink plenty of water or liquid as well.

    Since I'm always in a hurry to get ready for work, I prepare mine in the evening & the husks swell overnight.

    It is just sooooo gentle & works every day. The important word is "gentle" (when your have IBS).

    Forget the laxatives, or drugs or whatever. I really don't feel they're necessary. If I've had alot of codiene (which is very constipating) I sometimes have a bowl of this cereal after dinner.

    It's very filling.

    So my current breakfast is:
    1. 1 1/2 ounces or 45 grams of this rice cereal
    2. 1 tablespoon of psyllium husks
    3. 1 tablespoon of freshly ground flaxseed (your digestive system can't break the outer layer of a flaxseed,you need to grind them in a spice grinder to break them open & like all seeds, you should do this fresh each day or maybe grind enough for 3 days at once - store them in the fridge. Most seeds or oils go rancid fairly quickly. I try to buy small quantities & use them in 1-2 months).
    4. Acai powder - 1 scoop (first time I've tried this & don't notice any difference so I won't be buying this expensive anti-oxidant again).
    5. Rice milk (or dairy, or soy, or almond milk - what ever you like). I have used soy milk for 25 years until I tried rice milk a few months ago & like it much better).
    6. In winter - a banana (for the potassium)
    In summer - blueberries, strawberries & raspberries depending on the price (or when I feel extravagent all three). I spend a lot of money on berries in the summer. Only because I work & can afford to.
    6. About 5-6 organic walnuts chopped up. I prefer organic nuts. I prefer to only buy organic meat, fruit & vegetables & nuts now. I would rather go without clothes, shoes, haircuts & I haven't had a holiday in 18 years or more (even if I had the energy to actually go somewhere).

    I think you have to get your priorities right when you have chronic ill health. No point buying shoes & clothes if you're too ill to step outside the door (or get out of bed).

    Victoria

    I put the fruit & walnuts on in the morning, not at night.

    Out of all the breakfasts I tried over the years, this has to be the quickest, best, most filling & good for regular soft, gentle bowel movements.

    This is my weekday breakfast before work.

    On the weekend, depending on what I'm doing, I usually have a bunch of organic spinach steamed with a couple of organic free range eggs poached on top OR grilled field mushrooms with steamed spinach.

    But it's the psyllium husks that I can't recommend highly enough.

    Victoria
  7. xchocoholic

    xchocoholic Senior Member

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    Victoria,

    I have to disagree with you here ...

    I haven't looked at all the types / sources of caffeine yet but the guarana didn't make me feel jittery or upset my stomach like coffee or tea do. So it's not necessarily going to have the same affects on everyone. I looked at it for a minute and saw that it has some phytochemicals so that may be what makes it more tolerable for me ... But again I haven't looked at it thoroughly yet so I don't know ...

    I didn't realize it was even in the chocolate bar until after I'd eat a few bars and noticed that I was feeling a lot perkier afterwards .. FWIW ... I gave it up because I kept eating the chocolate bar and not thinking about how much guarana I was getting and it kept me up a couple of nights. 5HTP fixed the problem but I don't want to have to take 5HTP to undo taking too much guarana..

    The plan is to buy some guarana so I can monitor the dosage. Since I'm healthy at rest, I can take caffeine on occasion and not worry about it.

    I don't appear to be someone who gets addicted to anything ... pot, alcohol, chocolate, anything ... so it didn't affect me to give it up. Or maybe I'm just good at ignoring my body when it asks for something I'm not going to give it.

    Not that I didn't miss the chocolate but I've quit chocolate so many times in the last 4 years that I don't think I was actually "addicted" ... I just enjoy it ... esp the Belgium dark chocolate ... :D

    FWIW ... our bodies all work differently so any studies about how a supplement or a drug works for everyone need to be taken with a huge grain of salt. Anyone who's taken a drug (tested and approved by the FDA) that was prescribed by their doctor and then had a negative response to it knows this.

    About the bowel movements making us feel better .. there's a huge clue that what you're putting in your body is making you sick. And NO, taking a supplement can not undo the effects of all the crap you're eating ... :rolleyes:

    Check out this article by dogtorj ... Here's a quick quote but anything he has written is helpful. I picked this one because he mentions that in addition to eliminating food intolerances, we need melatonin and serotonin and these appear to be helping me now ... I'm waking up feeling good and after breakfast I'm feeling totally healthy until, I get tired in a couple of hours ... it's better than it was though ... :)

    http://www.dogtorj.net/id99.html


    TC ... X
  8. Victoria

    Victoria Senior Member

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    Xchocoholic,

    perhaps I wasn't clear. I said they are putting guarana in many energy drinks here in Australia & chocolate bars.

    I meant Australia. I don't know about the products you can buy in other parts of the world. I'm not saying the US put guarana in their chocolate, you would have to read the small print on the packaging to ascertain that.

    Australia has strict labelling laws & producers must list all contents with the highest percentage of raw product listed first (& whether the factory machinery used for processing has been used for nuts & other potential allergy foods).

    I don't know whether the US, Canada, the UK & other countries have the same labelling laws.

    A few pieces of good quality dark chocolate are supposed to be good for you, so if you can stop at 2-3 pieces, fine. I don't like dark chocolate myself.

    It always pays to read the label.

    And we'll have to agree to disagree here, Guarana has the same effect as caffiene & is addictive in that sense.

    If you can tolerate Guarana for a pick me up (as opposed to tea or coffee which makes you jittery), well certainly use it as a stimulant to give you energy - you know your own body & what you can tolerate.

    I guess I'm warning people that while guarana is a stimulant & will give you more energy, be aware of the downside.

    Victoria :)
  9. _Kim_

    _Kim_ Guest

    Victoria, I concur.

    I am highly sensitive to caffeine as are all of the women in my family. It gives us "the breathies", a term my sister coined when she was very young, watching my mother grasp for air after being accidentally caffeinated at a local diner. I have the same reaction to anything containing guarana. "Guaranateed" panic-attack.
  10. xchocoholic

    xchocoholic Senior Member

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    Victoria,

    I'm sorry to hear that they are adding guarana to so many products in Australia. I don't eat or drink many foods that are processed so I'm not up on energy drinks, caffeine supplements, etc ...

    This link may be in this thread already but here it is again ...

    Here's an article by Webmd saying guarana is being used for CFS/OI ...

    http://www.webmd.com/vitamins-supplements/ingredientmono-935...p;source=3


    My CFS neuro symptoms are under control now ... kow ... so since this appears to be helping CFSers with orthostatic intolerance, according to Webmd, who I don't normally quote, this may help with that ...


    More on guarana ...

    http://www.phytochemicals.info/plants/guarana.php

    I hope this clears this up ...

    Certainly if someone is sensitive to caffeine, they should be careful with this ... BUT ... what I'm saying is that I'm sensitive to the caffeine in tea and coffee and this caffeine didn't make me feel jittery or upset my stomach ... symptoms I relate to caffeine ... so we need to look at how we're getting caffeine too. I had no idea that there were other sources of caffeine until I started looking into this chocolate bar. BTW. This bar has guarana listed as an ingredient but it didn't register with me cause I had no idea what guarana was.

    I may not have made this clear yet either but 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. And afterwards, I'm back to having my "normal" CFS energy level.

    FWIW ... It appears that the guarana just bumped whatever energy I had and isn't responsible for my feeling totally healthy because I'm feeling totally healthy every morning now ... I just fade after a few hours and never feel quite as good after that. I'm trying to figure out what's happening ...

    TC ... Marcia
  11. xchocoholic

    xchocoholic Senior Member

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    Kim,

    I had my first bad adrenaline / heart palp episode the other day. I think it was from eating Cinamon Rice Chex but of course I can't be sure. I don't eat this kind of foods (processed) and I'm not going to try it again ... I only bought it to make a trail mix for my celiac support group mtg. BTW. For the celiacs in the crowd, have you noticed that "normal" celiacs can eat this crap or even eat out and NOT get sick ? I know 2 celiacs who cheat on occasion because all they get is diarhea. There's something very wrong with the diagnosis of celiac disease as opposed to gluten sensitivity ...

    This appeared to help me to get over it ...

    Here's an article I found on this. I only copied in one paragraph.

    http://www.drrind.com/therapies/adrenal-support-recommendation-sheet


    HTH ... Marcia
  12. LazyLizard

    LazyLizard 11yrs with ME

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    Same here

    Oh yes! Same here.
    Sudden miraculous improvement for a few hours or days without
    being able to nail it what triggered it.

    What can trigger it for me is a weather change from cold, wet, windy to
    warm and dry or a very emotional positive feeling or certain foods.
    But with the foods it doesn't always happen. So one day I
    didn't get around being served a cup of tea at 4pm and along with
    it came a piece of fruit cake. Normally I steer well clear of caffeine
    but this time I had some of the tea and cake.
    OH YEAH! I was feeling so beautiful. It was heaven. Feeling just
    like a normal person for several hours.
    Does it happen every time I have tea and fruit cake? Of course
    not.
    I haven't had this reaction with supplements though.
    "My research" has also shown that I need to be well rested for
    this to happen. So heaps of rest doesn't garantee a big improvement
    but increases chances of this temporary recovery.

    And part of the reason why it doesn't last longer is that I can't
    help but take advantage of that burst of energy. Sometimes I
    have crashed severely afterwards but even with the most cautious
    approach it eventually fizzles out.

    So yeah, interesting thread. I was always too chicken to post
    this phenomenon. Well done!
  13. _Kim_

    _Kim_ Guest

    Hi Marcia,

    I know Rice and Corn Chex are gluten-free, but I wasn't aware that the Cinnamon RC was too. Don't matter, I can't eat any of them :(

    Well, now that you mention Collagen...I've been taking 10 grams before bed for about 4 months now. I am taking it (off label :)) for osteoarthritis in my hands and it works brilliantly. I had to get off of glucosamine sulfate as it was provoking hypoglycemia. The Collagen has also regrown my thinning eyebrows and eyelashes and has made my hair much thicker. But I've had zero improvement with digestive issues or any other CFS symptom for that matter. But my hands feel great!
  14. xchocoholic

    xchocoholic Senior Member

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    Hi LizardLady,

    That new show "V" has given me a whole new respect for your name ... :D That's great that you're doing this too. I never felt this way until I'd healed quite a bit back in 2006 ...

    I think Myhill does a good job of explaining ATP and PEM and why caffeine helps boost our energy .. This is about 1/2 way down ...

    http://www.drmyhill.co.uk/article.cfm?id=381

    I don't understand why she recommend ribose though when it appears that plain old sugar / or in my case orange juice does the trick ... TC ... x

    Kim,

    I never eat Chex or other "crap" foods of any kind except when I have a celiac support group mtg or run errands with my celiac buddy and have to grab something for energy ... I was making a trail mix for the group and couldn't resist trying them ... :eek: It's a habit I'm trying to break though. And actually, I'm finding these foods don't taste as good as I imagine they do.

    It's late here but I'll have to look at this article more closely tomorrow. I thought when he was talking about collagen he was referring to bone marrow broth. I was feeling horrible and happened to have some in the freezer.

    I've been trying to learn more about aminos recently since apparently, I'm not digesting proteins properly and ran into a comment about how too much glycine could cause a problem with the Kreb's cycle. I'd never connected aminos to the Kreb's cycle until then ... There is just so much to learn about our bodies when it comes to this DD ...

    Now to try to go back to sleep ...
  15. xchocoholic

    xchocoholic Senior Member

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    Ok, so I'm feeling great most mornings now and only fade after a few hours of housework. And yesterday I felt totally healthy all day long. I was at my pre illness energy level ... so why am I not more excited ? :p

    Cause feeling totally healthy has happened to me 4 or 5 times before now and it never lasts. And I always get PEM afterwards ...

    Feeling great most mornings is new :) but I just don't want to get fooled into thinking I'm getting over this DD when it appears that it's not going to last. Or I'm still going to be stuck with just a milder case of CFS.

    Sorry to complain, I know I should just be happy about this but I've gotten a taste of what healthy feels like and I want more now ...

    BTW, I'm guessing that this increase in energy is from the new aminos I'm taking. I was just taking a few that I was told were good for us, including tryptophan, carnitine, taurine, tyrosine, etc etc when it finally hit me that I REALLY needed the essential aminos ... duh !! I'm still taking the others but it just makes sense to get the basics too.

    TC ... Marcia

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