1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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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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PREbiotics

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Diva55, Sep 17, 2009.

  1. Diva55

    Diva55 Member

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    I dont think Ive seen people discussing PREbiotics but apologies if Ive missed it.

    I have FM with CFS thrown in & more recently IBS which was diagnosed by intensive testing.
    At the worst my stomach was so swollen that I looked 9 months pregnant & the pain was excruciating.

    I am now under the care of an excellent Gastro Dietician provided by the NHS in the UK. She believes only in food & supplements for healing & wont go near drugs. She did say to me that she thinks most doctors are idiots!

    We have worked on exclusion diets to track down any trigger foods so I know what to avoid. Interestingly one food was prepacked bread as the chemicals in it are a problem. The best thing is to get freshly baked bread or make your own. Ive found this to be partly successful & have been able to eat bread again.

    We have discussed PRObiotics as I have been trialling many different types & some with huge amounts of strains. Ive had success with Jarrow Formula which has helped decrease the size of my stomach & as a sideline Ive managed to lose about 7lbs in weight (which I really need).

    However the dietician said that she & her colleagues are now coming round to the fact that PREbiotics are better for healing than probiotics as they can stimulate the growth of your good guys.

    Probiotics are said to add to the good guys but dont stand a lot of chance as they are attacked by gastric acid & then fought by the bad guys.

    She believes I have a bacterial overgrowth in the large gut which has the effect of fermenting foods, hence the large & swollen stomach with pains.

    Id read about prebiotics some years ago but not followed it up. So after discussing it with her she sent me a list of prebiotic foods & I looked up supplements.

    I came across InulinFOS which is made from chicory (a prebiotic rich food). And the great thing it is SO cheap! Probiotics can get really expensive.

    I bought Jarrow Formula & it was only about $5.50 for a tub! You just sprinkle a small scoop on food or in a drink.
    Im doing a months trial with Inulin & have to report back my responses to the dietician. She wants me to continue with probiotics as Ive had success with them (but still some IBS attacks).

    Ive only been taking Inulin about a week but so far so good. My stomach is softer & flatter.

    Im hoping that the combination will help heal my gut which in turn should help with FM pain. If in time I can drop Probiotics in favour of Prebiotics all the better for my limited finances.

    Id be interested to know if anyone else has tried prebiotics & what their reactions have been.
    Best wishes
  2. busybee

    busybee Senior Member

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  3. Frank

    Frank Senior Member

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    yes prebiotics are controversial.
    I think it's wiser to invest in a good probiotic. (VSL#3 , dr. Ohhira's probiotic, ...) or maybe psyllium husks.

    I beat my IBS after taking for 6 months a Belgian product called Mucoperm. The product claims to heal gut permeability. It's supported by Prof.Maes.

    here
    you'll find the ingredints (at the bottom)

    Frank
  4. Dreambirdie

    Dreambirdie work in progress

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    S504...

    That's quite an ingredient list on the Mucoperm, with several things I can't take at all, especially Spirulina.

    I have used L-Glutamine on its own and found that to be very effective for healing gut permeability. It's also rather cheap in comparison. For me it worked very well, and VERY quickly to reduce bloating and discomfort. Thanks for reminding me of it.
  5. Dreambirdie

    Dreambirdie work in progress

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    Hello Diva 55--

    I'm surprised that you're eating bread of any kind...? Aren't glutenous grains usually a problem for those with IBS type of symptoms? I have felt a lot better after eliminating most grains from my diet.
  6. Diva55

    Diva55 Member

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    BusybeeThank you for pointing out those interviews I really should try & read through all mails here first!

    Ive only just skimmed the interviews but will try to take it all in later.
    I will print them out & pass to my dietician for comment.

    FrankIm surprised to hear that prebiotics are so controversial when I have a Gastro dietician telling me otherwise! I do trust her advice as she has steered me through some distressing problems.

    I do take some really good probiotics which I switch around as I said Id love to cut down on those to save money.

    I couldnt take a product like Mucoperm as some of the ingredients would be a problem as Im doing Rich Vanks Methylation Protocol. But happy that it helped you so much.

    Dreambirdie
    Thats great you found something that helped you. Ill look into it.

    With bread I had cut it out along with grains for a while. Whenever I tried it I had a bad reaction. As I said the dietician said she thought it was the chemicals added to pre-packaged bread to prolong shelf life.

    So she suggested getting freshly baked bread which had no chemicals added or to make my own. I made my own & found I had no reaction to it which is great as I get cravings for bread every now & then. You can of course control what youre putting in it.

    Thanks for all your comments.

    Best wishes
  7. Diva55

    Diva55 Member

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    Prebiotics update

    Just thought I'd give an update on my journey with taking prebiotics (Inulin).

    It's been about 6 weeks since I started Inulin along with Probiotics (mainly Jarrow but have used Sedona Labs as well).

    Well I've lost weight without changing anything, my stomach is flatter & softer & I've only had 2 small IBS attacks.

    This is instead of the usual rock hard swollen stomach & many very severe IBS attacks with loads of pain & toilet problems!

    I can only put down this amazing change to Inulin which is the only thing I've added for IBS.

    When speaking to my dietician she said to continue the combination of Inulin & Probiotics as it's obviously working. I should also experiment with introducing foods which I couldn't tolerate previously

    I've tried such things as pasta, cheese, rice which I haven't been able to tolerate previously & have been fine with these! I only do small amounts as I'm still cautious but I'm quite excited that I can expand my very bland & limited diet.

    I know prebiotics are controversial but I would have eaten dirt if it helped with IBS so I'll continue with Inulin.
  8. Tony

    Tony Still working on it all..

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    If you're still about Diva...good for you! Again this shows just how different we all are as a group. I couldn't tolerate inulin. Hope the improvement continues for you...:)
  9. Diva55

    Diva55 Member

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    Hi Tony
    Still about - tend to read a lot on here rather than post.

    I'm still doing very well with Inulin - many thanks for your good wishes.
    I haven't had a bad bout of IBS for months now after starting Inulin.
    I've just had a few twinges which is like a miracle for me after I went through hell for so long.

    I'm so sorry you couldn't tolerate Inulin but I feel it's worth trying if people are desperate. Although of course I'm aware of the controversy about taking Inulin which people should investigate first.

    Yes we are all so different - what a shame we can't have a one size fits all to help people!

    I hope you find some help soon.

    Best wishes
  10. Tony

    Tony Still working on it all..

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    Inulin isn't an option for me due to fructose malabsorption. Many, maybe 45%, with ME/CFS have this problem. Inulin contains fructan, chains of fructose sugars. http://en.wikipedia.org/wiki/Fructan

    It's obviously of real benefit for you though.

    It may be that inulin can promote bifidus bacterial growth. Whatever it is, I'm glad you found it...:)
  11. JanisB

    JanisB Senior Member

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    Interesting new prebiotic called Phloe -- from New Zealand, now marketed in US by Allergy Research/Nutricology. It is expensive; comes from Kiwi fruit. Testing on humans in China showed that it supported growth of healthy bacteria and demise of several unhealthy strains, but there was one unhealthy strain that also increased.

    If you are following the methylation protocol, look at Yasko's gut protocols. She also recommends lactoferrin as a prebiotic,
  12. Diva55

    Diva55 Member

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    That's very interesting. Thanks Janis.
    I looked them up and as you say fairly expensive but if you can't take Inulin these maybe a good alternative.

    I'm so happy I can take Inulin as it's so cheap!!

    Best wishes

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