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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Huge improvement in two hours

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

  1. Elph68

    Elph68 Senior Member

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    My question again ....
  2. Elph68

    Elph68 Senior Member

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    Hi JAH,

    I chew the gum all day .... I have had a sore throat for over 2 years .... now I can eat chilli again ....

    cheers.
    maryb and JAH like this.
  3. JAH

    JAH Senior Member

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    Thanks elph68, wasn't sure there was enough in gum to do anything. Enjoy the chili!
  4. maryb

    maryb iherb code TAK122

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    @Elph68 @Hip
    well that puts antibiotics out for me.re - aminoglycosides - streptomycin etc

    I was told by a well informed member on PR that I carry a mutant? gene which means that taking these type of a/biotics can cause in deafness. I've checked out all the links and it is the case. Another good reason to have genetic tests?
    taniaaust1 likes this.
  5. lansbergen

    lansbergen Senior Member

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    It won't. The parts that are overstimulated must be calmed down and the parts that fail must be activated.
  6. knackers323

    knackers323 Senior Member

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    Hi Antares
    No I stopped taking it after a few days because I am looking into other things but I will come back to it.

    Sorry to hear it isn't working for you
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Where is your evidence that the bugs are in the lymphatic system?
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Just want to warn that grapefruit seed extract is reported to interact with some medications, notably warfarin. There's some interesting info about grapefruit seed extract here.
  9. maryb

    maryb iherb code TAK122

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    @MeSci
    thanks = interesting link, I've avoided citrus since food intolerance testing so I suppose I can only try it and see. maybe even less than half a tablet I think.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I use xylitol as a sweetener in tea and coffee. I also sometimes eat chocolate sweetened with xylitol. I haven't noticed any adverse effects, and am using it as part of my low-carb diet. No idea if it helps with my gut flora as the diet and supplements and periodic courses of grapefruit seed extract are hopefully doing that.
    Adlyfrost and JAH like this.
  11. Leopardtail

    Leopardtail Senior Member

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    Terminology re the Immune System causes easy confusion. In Alternative medicine lymphatic system usually refers to lymph nodes and lymph vessels (or channels) - this are only the circulatory part of the system. In medicine lymphatic system refers to the whole immune system thus causing a lot of confusion. It really is a failure of science that the same terms refers both to the whole immune system and to the lymphatic waste disposal system.

    The lymphocytes referred to in that article are white blood cells (or immune cells) but more likely in blood than lymphatic fluid. The cells that line the lymphatic vessels do not seem to be referred to as lymphocytes in order to avoid confusion.

    Without clearing the system of these bugs full recovery does seem unlikely if for no other reason than they put the system under stress and demand energy that is under short supply. I would caution against arguing that this action alone will produce full recovery with your doctor though. It takes a package of measures to improve long term ME such that the whole system starts to work and failures in one part do not undo the good you are attempting elsewhere.
    Lou likes this.
  12. Leopardtail

    Leopardtail Senior Member

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    The (theoretical) answer to this one is dead easy the immune system is in the first place under-performing as such the infections concerned are at a low level. They are harder to detect because our immune systems seem to fail in a general order and medicine expects them all to be working as normal. Because of this our immune system fight these infections well enough to stop us dying (the common cold killed thousands of South Sea Islanders when first introduced) it keeps them at low levels. However our immune system does not work well enough to (almost) eradicate them as in normal health.

    If you have infections (especially any virus) over a certain time you should fever most of us don't. That would be a single example of our immune dysfunctions.

    The next thing that needs to be understood is that many symptoms of infection are not directly caused by the infection, but by the immune response (e.g. fever, pain, runny nose, green snot). This means that when you repair immune response that feeling worse for a short while is scientific certainty. Being more healthy may actually make you feel worse until the immune system does it's job. The other idea suggested of a 'die off reaction' may also be part of this issue but I have not seen sufficiently solid proof that (however possible) it's occurring.

    My personal opinion is that we all need to deal with the mitochondrial stuff first and doing them systematically. I personally am not fatigued much more than that I am fundamentally short of energy. Improving anything else before improving energy production seems likely to worsen recovery symptoms.

    So far everything that has worked for me in any substantial way has produced small improvement followed by a 'recovery crash' followed by more substantial improvement.
    WoolPippi, rosie26 and Lou like this.
  13. Hip

    Hip Senior Member

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    I have only come across one mechanism for leaky gut: the cellular junction mechanism, where intestinal permeability results from a dysfunction of the tight junctions bonding adjacent epithelial cells together.

    Would you have any weblinks that detail this other mechanism of creating leaky gut you mention — the "destruction of epithelial cells" mechanism?
  14. Elph68

    Elph68 Senior Member

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    Hi MeSci,

    Personally, all my lymphatic nodes in my neck and groin are enlarged and palpable. so they are in my lymphatic system. And this is all part of what I am putting together for you ... as it is what you asked for ... a referenced document as I now have not had any brain fog for 6 weeks :)

    Strep Mitis group pathogenic strains produce and extracellular protease which causes an inflammatory response and IgA antibodies (this causes the gluten intolerance) but the immune system can't eradicate the bacteria (I have papers on this). So when you have leaky gut, the bacteria break through the epithelial barrier and have direct access to the lymphatic system. The immune system can't stop them, so they would take up residence, produce these protease and exotoxins (such as LTA lipoteichoic acid), and hydrogen sulphide which would damage the lymphatic system internally ... now I believe NK cells are produced in the lymphatic system?? (I am sure I will be told if I am wrong) .... Therefore this action is an explanation as to why the NK cell count is messed up in ME/CFS sufferers

    I am currently researching to see if anybody has ever picked this up scientifically before.
  15. maryb

    maryb iherb code TAK122

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    @Elph68
    You need to keep an eye on kidney function whilst on vancomycin.
  16. Elph68

    Elph68 Senior Member

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    Thanks maryb .... none of those abx are real good for the kidneys ....

    I just had 4 weeks of oral vancomycin to fix my gut, it sure cleared my brain fog .... see what happens from here ...

    Cheers.
  17. Elph68

    Elph68 Senior Member

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    Hi Hip,

    any destruction of epithelial cells causes an inflammation process and can create tears in the bowel lining, resulting in a leaky gut ..... here is a link to hydrogen sulphide ....

    http://www.ncbi.nlm.nih.gov/pubmed/20120018

    http://mcr.aacrjournals.org/content/4/1/9.long
  18. Hip

    Hip Senior Member

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    Those two studies refer to the genotoxic effects of H2S, but don't mention anything about leaky gut.

    And you are again stating that destruction of epithelial cells leads to leaky gut, but where did you read this? Because I have not come across any such mechanism.
  19. Elph68

    Elph68 Senior Member

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    That is correct Hip, ...

    Once you have punched holes in the bowels epithelial layer, what do you have???
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Lymphadenopathy (swollen lymph nodes) is a standard symptom of immune activity, e.g. as a response to infection or, in autoimmunity, an autoimmune flare. It is a typical symptom of ME/CFS. It does not mean that any infection is IN the lymphatic system, let alone one that can't be shifted. It might be, but there is no evidence that I know of that says it is. There's quite a good primer on the immune system including the lymphatic system here.

    We appear to have sluggish/blocked lymph ducts, which could be one reason why our lymph nodes are swollen so much of the time. Lymph is normally moved along the lymph ducts by skeletal muscle contraction, so that one can see how lymph flow might become sluggish if someone is physically inactive.

    That's the basis for manual lymphatic drainage/massage techniques (e.g. the Perrin technique) which some people find symptomatically beneficial - they purportedly move the lymph along the ducts, which could flush out toxins and reduce swelling.
    Last edited: Jan 10, 2014
    Leopardtail likes this.

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