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Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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Huge improvement in two hours

Discussion in 'General ME/CFS Discussion' started by knackers323, Dec 24, 2013.

  1. maryb

    maryb iherb code TAK122

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    @MeSci
    what would you consider a short course of grapefruit seed extract? and how much a day? I have 100mg tablets.
    Given my intolerances I could try half a tablet.............
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wouldn't want to make any recommendations as I only know what has helped me. I use Viridian 400mg capsules, and take one or two a day for one or two weeks. It usually sorts my bowels out, but not always, so there is presumably something else going on - something inappropriate in my diet, over-exertion or goodness-knows-what!

    If only I could get an indwelling device that measures and reports all abnormalities on a continuous basis (ideally accompanied by advice on what to do about them) I would be recovered in no time! :lol:
    rosie26 likes this.
  3. maryb

    maryb iherb code TAK122

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    :D:D me too - let me know when you've found one............
    rosie26 likes this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'll tell EVERYONE! (and I expect anyone else to do the same...)
  5. maryb

    maryb iherb code TAK122

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    @MeSci
    I like the term 'indwelling device' it makes me laugh..........
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    They already exist for blood glucose monitoring, and there are lots of patent applications for other kinds. I'm sure it's only a matter of time before they become available for monitoring multiple parameters.
  7. Lou

    Lou Senior Member

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    Last edited: Jan 8, 2014
    MeSci likes this.
  8. Elph68

    Elph68 Senior Member

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    Hi maryb,

    basically they say follow the 'caveman' or paleo diet ... Personally I follow Atkins .... but low carbs, no sugar, no bread, no fruit etc. keeps them supressed .....

    Cheers
  9. Hip

    Hip Senior Member

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    Hi Elph68

    Please can you provide some references for the above statements that hydrogen sulphide or hydrogen peroxide from bacteria can cause leaky gut.

    I was unable to find any studies or literature indicating that hydrogen sulphide or hydrogen peroxide from bacteria can increase intestinal permeability.

    Though I did find this study which found that hydrogen peroxide increase the permeability of the blood-brain barrier. Note however that some probiotic bacteria such as Lactobacillus produce hydrogen peroxide, and probiotics are not known to cause leaky gut (in fact, rather the opposite).

    I also could not find any literature on gut acidosis leading to more hydrogen peroxide production from bacteria. Could you provide a reference for this please.

    I did however find this study that mentions hydrogen peroxide from Enterococcus faecalis might (but this is not proven) lead to colonic polyps; but I found no details of any general link between hydrogen peroxide from bacteria and colonic polyps or colon cancer.
    MeSci likes this.
  10. Elph68

    Elph68 Senior Member

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    Hi MeSci,

    I invite you to look at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC404567/ it talks about antibodies and peptides ... I have a lot more, I am sorting through them .... I am just trying to get across that once these bugs are in the lymphatic system, they do long term and sustained damage .... even after the gut is fixed ....

    So clearing them out of the lymphatic system = chance of full recovery ...
  11. maryb

    maryb iherb code TAK122

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    @Elph68
    so how do you get them out of the lymph system? Can you explain it briefly, not really up to reading many papers.
  12. Elph68

    Elph68 Senior Member

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    Hi Hip,

    Let me get these together for you .... I have over 200 papers across 2 computers and I am not very organized.

    You are right, H2O2 is produced by lactobacillus, that is how the female vagina fends off pathogens .... it becomes a problem though when they join forces with biofilm forming bacteria such as strep/enterococcus in the gut .....

    I keep coming back to the bacterial strains .... and the undetectability of the infection ... Not all bacteria are equal even though the medico's consider them 'normal' ......

    Cancer causing properties

    http://iai.asm.org/content/80/10/3545.full

    http://cancerres.aacrjournals.org/content/68/23/9909.short

    http://iai.asm.org/content/early/2012/07/24/IAI.00479-12.full.pdf

    http://lup.lub.lu.se/luur/download?func=downloadFile&recordOId=3931227&fileOId=4145674

    And this one shows you how all lactobacillus aren't equal ....

    http://jpp.krakow.pl/journal/archive/12_09_s6/pdf/55_12_09_s6_article.pdf
    Last edited: Jan 8, 2014
  13. Antares in NYC

    Antares in NYC Senior Member

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    Ok... Day three taking rhamnosus lysate capsules, and I actually feel worse. Not good at all.

    Things that have markedly worsened today:
    - Brain fog (as bad as it gets)
    - Fatigue and shortness of breath
    - Headaches and visual noise (light sensitivity, floaters)
    - Sleep (slept quite poorly last night, worse than the night before; feeling wrecked today)
    - Stomach cramps, IBS symptoms

    I would appreciate it if anyone could let me know what this means.

    Again, I keep my reservations that maybe the exposure to the frigid cold over the last few days may have messed me up too, and may be developing a major cold. Not sure, but can't discard it.

    For the record, I did experience an uptick in alertness and thinking on the first day taking this supplement (as listed in this post). Then half way through the second day things started to go downhill.

    Hip, I'm not as versed as many of you guys in these medical terms. I have been told in the past about the relationship of cytokines and CFS symptoms, but most of it escapes my understanding.

    If rhamnosus lysate estimulates Th1 cytokines, but I feel worse taking it, what does it mean? What should I look into? What tests should I ask my doctor to take in regards to my gut flora?

    Hi Knackers323: are you still taking the supplement? Have you noticed any changes, any improvement or worsening of symptoms and general condition?


    PS: brain-fog so bad today that it took me many passes to actually type and edit this note.
    Last edited: Jan 8, 2014
    redrachel76 likes this.
  14. Elph68

    Elph68 Senior Member

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    Hi maryb,

    the only way in mainstream medicine is with very powerful IV/injectable antibiotics ... Gentamycin, streptamycin, vancomycin, daptomycin .....

    Good luck getting someone to prescribe them .....

    Cheers.
    I am just being devils advocate here .....

    If the immune system is burnt out because of a continuous infection and overstimulation (as a result of an undetectable infection), then how is trying to stimulate it more going to make things better??

    When the dog is dead, you can kick it all you like but it ain't going to get up and start barking again......

    As I said, devils advocate ... wouldn't it be better to remove all stimulation (kill the infection) and then repair the immune system??

    Cheers.
  15. lansbergen

    lansbergen Senior Member

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    You need a good working immune system to eliminate an infection.

    You can not remove all stimuly and if you could you would dy.
  16. Elph68

    Elph68 Senior Member

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    Hi Iansbergen,

    It still comes back to my question 'if the immune system has been overstimulated from an infection that is impossible to clear, how is stimulating it more going to make it better?'

    A dead dog won't get up and bark no matter how much you kick it .....
  17. Hip

    Hip Senior Member

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    @Elph68
    I don't see any evidence in those studies you cited that hydrogen sulphide or hydrogen peroxide from bacteria can cause leaky gut.
  18. Elph68

    Elph68 Senior Member

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    Hi Hip,

    I haven't got to the rest of them yet ... A leaky gut is either a relaxing of the cellular junctions OR the destruction of epithelial cells, which allows transfer of small and large molecules .... Those papers show that hydrogen peroxide creates holes in the epithelial layer = leaky gut ...

    I am presenting that leaky gut comes in more than 1 form .....

    I have to go through my home pc to drag out the rest with regards to Hydrogen Sulphide ....
  19. Antares in NYC

    Antares in NYC Senior Member

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    Lord, I'm feeling like my brain is being submerged in battery acid. I need to call my doctor tomorrow. I'm definitely falling into a major CFS crash, and fast.

    Not sure which ME/CFS subgroup I belong to, but I'm thinking this supplement is not for me.

    Edit: I just remembered that in the past I got similar reactions from certain supplements. Last year I got a similar reaction (although not as awful as today's) when I tried astragalus to boost immune function. I can sense a pattern.
    Last edited: Jan 8, 2014
    Adlyfrost likes this.
  20. JAH

    JAH Senior Member

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    Is there a xylitol product that you can recommend? Have you tried it, is there anyone who has tried it and can share their experience?

    Thanks

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