The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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The Undetectable Infection

Discussion in 'General ME/CFS Discussion' started by Elph68, Nov 30, 2013.

  1. Elph68

    Elph68 Senior Member

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    I hope everyone has had a great Xmas

    Something that may be of interest for those who suffer from nerve pain.

    You may already know this but an enzyme known as neuraminidase has been identified as a substance that reverses/repairs nerve damage thus removing burning pain etc.
    https://www.diabetesselfmanagement.com/blog/mouse-study-sheds-light-on-cause-of-neuropathy-pain/

    This enzyme is produced by the bacteroids such as b fragilis and b vulgatis https://www.ncbi.nlm.nih.gov/pubmed/7463468

    It seems also that it has a positive effect on autism
    https://www.medscape.com/viewarticle/817733

    Seems b fragilis supplements are hard to find ..... anybody have any idea on a supplier.

    Cheers.
     
    pattismith, Asklipia and Wayne like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    That's a study in mice. No reason to assume that the same occurs in humans. And how on earth can one ascertain pain in mice, let alone a specific type?
     
    arboretum likes this.
  3. Elph68

    Elph68 Senior Member

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    If you look at the research that this particular university has done/is doing then you can see that there are a bunch of reaserchers there smarter than you and me who can answer your questions ......

    They have done a lot of research in this area and have made some very sound findings .....

    To make a long story short, they have found that neuropathy is caused by a form of calcification of the nerves, to which they also explain the process ..... funny how calcification pops up a lot when you look into our symptoms ......

    They also state how they made these findings and what processes cause the calcification .....

    Up to you whether you believe scientific research and how they apply it ..... but a lot of our current medical practices have come from mouse modelling (and other animals of course).

    So if the same process causes the same nerve damage in mice as it does in people, I am sure the poor mice are suffering as well .....
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I am well aware of the processes by which medical research is carried out nowadays, and the shortcomings thereof. I have a grade 1 Masters' degree in medical science.

    Yes, I believe that scientific research has a lot to offer - when it's done right.
     
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  5. ukxmrv

    ukxmrv Senior Member

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    They seem to be arguing that high blood glucose is setting off the changes which leads to this. Hence the tie-in to Diabetes I am guessing.

    It looks as if this goes beyond "simple" neuropathy into maybe a diabetes specific area?

    I've got peripheral neuropathy but not diabetes. My blood sugar levels doesn't appear to have any effect on my pain or sensitivities. However on other groups I belong to (i.e. Fibromyalgia and Lipedema / Lymphedema) I've noticed consistant posts from people who say that low sugar diets mean less pain for them. Does nothing for me though.
     
  6. Wayne

    Wayne Senior Member

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    HI Elph68,

    Thanks for posting this information. You might find this article, "Protecting Against Glycation and High Blood Sugar with Benfotiamine" of interest. I've tried benfotiamine, and feel it's a good supplement for me. Here's a copy of a graph from the article:

    WHAT YOU NEED TO KNOW: BENFOTIAMINE
    • Advanced glycation end products (AGEs) are produced in most tissues exposed to elevated blood sugar levels, and even in tissues exposed to normal blood sugar for a long enough time.

    • Advanced glycation end products induce oxidative stress and inflammation, and are responsible for a large amount of tissue damage and dysfunction in diabetic patients. They are increasingly being recognized as harmful in non-diabetic people as well.

    • The fat-soluble thiamine-derived nutrient benfotiamine blocks three of the major biochemical pathways through which high blood sugar promotes tissues damage—without known side effects. Benfotiamine can reach tissues more than five times more readily than thiamine (vitamin B1) itself, and has been widely used in Europe for decades.

    • An explosion of laboratory and human data now demonstrate that benfotiamine can block the actual tissue-level effects of AGEs and prevent their potentially deadly consequences in both diabetic and non-diabetic people.
     
  7. arboretum

    arboretum

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    I think that everyone needs to understand medicine and biology are a lot harder to understand than they seem. Not even the very best professors at top universities can understand and theorise correctly about these things unless it's with a lot of evidence, funding, replication by other people, and scientific consensus. Interpreting studies and evidence correctly is also very difficult, and it takes a lot of skill and experience.

    Being able to come to correct conclusions about CFS is especially unlikely, particularly with the current state of findings which haven't been replicated or failed to be replicated, no consensus on many different matters, the lack of clarity about whether it's a single condition or multiple conditions, and the relatively small amount of research (tiny compared to other conditions, which we also don't even understand) that's been done on it.

    I think everyone needs to show a bit more humility and uncertainty when theorising about these things. I think it's almost certainly impossible that anyone on a forum will make any progress on the cause or treatment of CFS.
     
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  8. anni66

    anni66 mum to ME daughter

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    Insulin resistance seems to be the driver of many conditions.
     
  9. Elph68

    Elph68 Senior Member

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    You are on the right track @anni66 ..... MSH is a family of peptide enzymes that controls metabolism and therefore is linked to insulin resistance ..... low MSH levels can produce obesity ..... high MSH can result in low body weight ..... MSH is produced in the skin, resulting in sun tans ..... it is also produced by the pituitary gland and other places .... Staphlyococcus breaks down MSH.....

    Researchers have been able to cure insulin restance and subsequently diabetes (again in mice) by MSH injections but are unable to obtain approval for human trials ......

    I have nurse friends that look after the elderly ..... whenever they treat infections with antibiotics in diabetics .... blood sugar goes down ..... I had the same problem ...... my blood sugar dropped to dangerously low levels on antibiotics.....

    Neuropathy can also be an auto-immune condition .......
     
  10. Elph68

    Elph68 Senior Member

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    May need to look a bit harder at that one ......
    https://www.news-medical.net/news/2008/06/15/39210.aspx
     
  11. Elph68

    Elph68 Senior Member

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    Those people who suffer skin conditions may be interested in this line of research ..... again it comes back to Staphlyococcus .......

    https://www.ncbi.nlm.nih.gov/pubmed/22310478

    There are a lot of papers that further support Staphlyococcus as the cause ....
     
  12. Elph68

    Elph68 Senior Member

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    So why is it difficult for reasearchers to link Staphlyococcus epidermidis to CFS ..... because when living on the skin it is totally inert .... in fact it can ferment glycerol which creates inhibition zones which repels other bacteria and helps to keep skin free of infection ..... https://link.springer.com/article/10.1007/s00253-013-5394-8

    The problem is everything changes when it has a source of glucose ..... like what is found in hair follicles and in the mucosa ..... they convert simple sugars into PIA (staph slime)....... http://onlinelibrary.wiley.com/doi/10.1046/j.1462-5822.2004.00367.x/full ...... PIA causes an inflammatory response ...... Staphlyococcus Aureus also produces PIA ..... the strain of bacteria depends on PIA production and on any person different strains can colonise different parts of the body, some may produce PIA, some may not ...... the more PIA producing strains ...... the harder the immune system is working ..... the more likely it will fail under stress ....... resulting in CFS

    Bacteria exposed to antibiotics will turn on their defences and produce PIA or steal genetic material from surrounding bacteria giving them the ability to produce PIA ......

    This also brings me to a common symptom, dry/irritated eyes ..... apart from colonisation of the ophthalmic nerve by these bacteria and producing PIA from the rich source of glucose feeding the brain, these bacteria live in the eye lashes and feed on the glucose feeding the hair follicle this producing the slime, which in turn irritates the eye lids/mucosa and can also turn to chronic infections ..... styes, conjunctivitis etc. are generally caused by staph ..... xylitol relieves symptoms for dry/irritated eyes ...... there are numerous people now who have contacted me on this forum who use this and now have relief .......

    Xylitol is a sugar the bacteria can’t convert to PIA ...... xylitol does not kill bacteria ..... it also prevents strep from producing biofilms ...... xylitol just slows down growth allowing other bacteria a chance to flourish ......
     
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  13. knackers323

    knackers323 Senior Member

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    @Elph68 know of anyone whos tried this treatment? low dosage arsenical drug (thiacetarsamide sodium, Caparsolate, iv., 0.1 ml/kg/day, for 2 days

    is it available in any other form beside iv?

    possible cfs cure in 2 days?

    www.anapsid.org/cnd/pets/cfs7dogs.pdf
     
    Asklipia likes this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    There's a short thread about it here: http://forums.phoenixrising.me/inde...in-mammals-dogs-horses-cats-and-others.35875/

    Another one here: http://forums.phoenixrising.me/index.php?threads/zoonoses-–-a-load-of-cock-and-bull.21860/
     
    Last edited: Jan 2, 2018
  15. knackers323

    knackers323 Senior Member

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    @MeSci thanks

    it seems no one has officially followed up on this? any reports of cfsers trying the treatment?

    if i could get it id definately try it

    wonder if any of the people currently looking into cfs are aware of this? seems like a reletively easy thing to try and test out. wonder if Dr. Davis has thought about it
     
  16. Elph68

    Elph68 Senior Member

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    Hey @knackers323 i don’t know how you would get onto that one .... I do know however that when given the right treatment recovery is quick ..... I would even strongly dispute the ‘things get worse before getting better due to dieback’ ..... my personal experience opposes this .......

    As I have seen some of your tests that show high levels of Staphlyococcus in your system I still reckon phage therapy would be the best course of action .....

    If you find a doc that will go after your staph, I have no doubt you would return to normal ......
     
  17. Elph68

    Elph68 Senior Member

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  18. knackers323

    knackers323 Senior Member

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    @Elph68 are you still totally symptom free? Still need to take treatment?

    I read there is a new medication being developed that is selective for staph
     
  19. Elph68

    Elph68 Senior Member

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    Pretty much .... I get up at 5am .... gym for an hour ..... work until 9pm a lot of days in our takeaway shop ...... I have not stopped my supplements however ..... although I do have gaps in my asking them ...... I don’t have the same stamina, but I am 50 this year so I imagine age is catching up with me now ......
     
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  20. Elph68

    Elph68 Senior Member

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    Hey @knackers323, I will come back to this ...... https://www.researchgate.net/public...igue_syndrome_-_A_randomised_controlled_trial

    The answer has been around for a long time ...... some of it is arrogance, some of it has a lot to do with drug companies ....... the rest is just misinformation and propaganda ........ but it is all about money!!!

    If the cure is phage therapy and fmt ...... how do drug companies make money out of that???

    Phages live all around us in the waterways ....... you can literally get feces from your next door neighbour ..... go and have a mud bath ...... climb a tree ..... pick up other bacteria to add biodiversity and compete with the bad guys ......
     

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