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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Huge improvement in two hours

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

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Like @Hip, I can't find any reference to destruction of epithelial cells in those papers, only damage to DNA. I only did a skim-read and brief keyword search in the second paper. Can you point us to where it refers to destruction of cells?
     
  2. lansbergen

    lansbergen Senior Member

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    Right.
     
  3. Hip

    Hip Senior Member

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    Unless you have references that show that destruction of epithelial cells leads to leaky gut, you shouldn't state this as a fact.


    Elph68, your statements do not seem to be backed up by science or fact; rather your statements are your own speculation.

    There is nothing wrong with presenting personal ideas and well-reasoned speculation, but you should make it clear what is fact, and what is speculation. If you present your own unverified ideas as an established fact, then that is misinformation. But if you make clear that these ideas are speculation, then fine.


    For example, it is fine to write: "I have an idea that the destruction of epithelial cells could lead to leaky gut," and then you might explain your reasoning of why you think this might be the case.

    But if you write: "the destruction of epithelial cells causes leaky gut," then it is wrong to say this, because you are presenting this as a proven fact, but really is just your personal hunch or speculative idea.


    Some of the most interesting writing on this forum is speculative but with the speculation based on a foundation of scientific fact. That is how science operates: it creates a solid foundation of established fact, and then makes small speculative leaps forward from that foundation.

    So this is why it is important to clearly state in your writing what is established fact, and what is a speculative leap forward from that foundation of fact.
     
    Last edited: Jan 10, 2014
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  4. Leopardtail

    Leopardtail Senior Member

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    I have read Perrin's book in some detail and checked out Lymph in medical publications / research papers. There are a couple of obvious points. Firstly most medical texts are more than ten years out of date (doctors learn slowly sigh). There is actually a pump in the lymphatic system in the 'mid thorac duct'. Second quite a few patients (me included) have too little water in their lymph making it thicker. Any infections destroyed by the immune system end up in lymph (it's the body's waste disposal system for stuff 'too big for blood') - I have over-simplfied a bit. MeCFS was right it's not so much the infection as its aftermath that is the issue here - its thickening the lymph.

    I had a CTI scan for example that detected 'an unknown foreign mass' in my spleen (part of the lymphatic system). That was likely to have been 'thickened lymph'.

    My pet theory is that this relates to us drinking like fish and peeing like racehorses - leading to too little water in lymph and subsequent difficulty (think in terms of pushing treacle rather than sugar solution through a long pipe). Add an accumulation of stuff that is dead and should be gone and the combined effect would produce this problem.
     
    Last edited: Jan 11, 2014
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    There appears to be some disagreement over whether lymph ducts have their own means of pumping lymph. I note that my previous link says not, but this one says
    It is indeed possible that thicker lymph due to dehydration (which we tend to have) will flow more slowly and that this may contribute to purported blockages.

    To clarify, it is the detritus from the immune destruction of pathogens that is disposed of in lymph, rather than actively-infectious material, is it not?
     
  6. Leopardtail

    Leopardtail Senior Member

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    You understood me correctly (detritus rather than active pathogens) being the principle/usual material in lymph channels).

    The 'official' position on lymph has been proven wrong very conclusively in at least one respect - there are connections with CSF. This has been proven using radioactive tracers (can't quote the research of the top of my head). With regards pumping it should take little more than a muscle flex to keep the peripheral lymph moving if the system is working normally (I beleive this to be widely agreed) so I am not sold on inactivity causing it. As far as I know there is only one 'pump' responsible for lymph flow and it's action is weak (it's nothing like the heart in blood circulation). It's located in the thorax where suitable normal muslces are unavailable. I have a lot of research to collate and this is not my main area of activity, but will gladly post when I re-find following collation.
     
  7. maryb

    maryb iherb code TAK122

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    I've had a lot of lymph massage from R Perrin - As soon as you massage up the back of the arm up round to the back of the shoulder something moves - I can also feel catarrh moving through my sinuses and down my throat.
    When he does the chest massage he finishes around the thorax area so that would make sense if the body had a bit of a natural push there.
     
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  8. Hip

    Hip Senior Member

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    @Leopardtail

    You might want to have a look at the supplement diosmin which "improves lymphatic drainage by increasing the frequency and intensity of lymphatic contractions, and by increasing the total number of functional lymphatic capillaries. Furthermore, diosmin with hesperidine decreases the diameter of lymphatic capillaries and the intralymphatic pressure."

    Other lymph flow supplements:
    Cleavers (Galium aparine)
    Marigold (Calendula officinalis)
     
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  9. Leopardtail

    Leopardtail Senior Member

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    Thanks hip, will look into the science once I have water metabolism in better shape (my current research project).
     
  10. Elph68

    Elph68 Senior Member

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    Hi MeSci,

    That is probably the case, but what I am suggesting is possible too ...... I am going for a week, but I would like to leave you with this.

    EBV, Mono AND some viridans strep species produce superantigens .... these cause immune system activation (Up to 100% T-Cell activation) against itself .... (Toxic shock syndrome is the most extreme form of this) and allow the pathogens to avoid the immune system allowing them to enter the lymphatic system or go wherever they want .. .....

    The second common link I have found between strep and viruses ...... The first being protease activity and the use of anti-virals ....
     
  11. lansbergen

    lansbergen Senior Member

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    Do you mean the lymphe system is not part of the immune system?????????
     
  12. Elph68

    Elph68 Senior Member

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    The lymphatic system is part of the immune system ....
     
  13. lansbergen

    lansbergen Senior Member

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    Then what do you mean by this?
     
  14. maryb

    maryb iherb code TAK122

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    @Elph68

    "I am going for a week"

    wherever you're going, and hope its somewhere nice - have a good time, don't forget to come back:)
     
  15. Antares in NYC

    Antares in NYC Senior Member

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    Just a quick update: I would recommend to exercise caution before trying this supplement. I have been immersed in a deep crash since I tried it, with no signs of improving any time soon.

    I feel that it definitely produced a quick immune response, but that immune response had an extremely negative effect on my CFS symptoms. I'm worried.

    Not sure about the meaning of this experiment, but to me it certainly points to immune disregulation, maybe even the enterovirus theory.
     
    Last edited: Jan 16, 2014
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  16. knackers323

    knackers323 Senior Member

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    Shit man I'm so sorry this has happened to you.
    However maybe it helps point you in the right direction.
    How do you feel this may be related to an enterovirus?
     
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  17. Antares in NYC

    Antares in NYC Senior Member

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    It happens. Most of us just keep experimenting until we find something that would help. I often feel desperate that nothing seems to make it better. I don't discard it could be a "die off" effect, but the symptoms I experienced were too drastic and too close to my original CFS onset. The headaches and stomach issues have been relentless since I took the supplement.

    Anyway, I have been reading a lot about the different theories for CFS, and the one that has always made sense to me was the gut enterovirus, as proposed by Dr. Chia. It explained my symptoms and timeline fairly well. I'm no doctor, and my brain is totally fried, so I don't think I could possibly attempt to explain what I learned. I know that now, even though my immune system is an absolute mess, if I take anything to boost it, it makes me feel awful. I'll attempt to discuss more that theory, but this is a great article to get started: http://www.anapsid.org/cnd/diffdx/polio1.html

    Ps: it bothered me that the results of Dr Lipkin's recent study didn't conclusively confirm this theory.
     
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  18. PathogenKiller

    PathogenKiller

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    I think you are right, elph and they do go to the lymph system to hide out. I used red root initially to get the lymph moving then Mucinex to help thin that fluid. I also used serrazimes to help attack the pathogen cell walls and keep my blood and lymph really moving. Adding a head out sauna really helped to draw out the infection, move the lymph and the toxins. It was a turn around in my healing.

    Personally, my special sauce seems to be a rx antifungal + azithro - Im off of the zithro now but am thinking of asking for a pulsed iv treatment because I regained so much of my energy, damnit, I want it all.

    I had a lab verified mycoplasma pneumonia, chronic strep, lyme and a 4+ saprophytic fungi dysbiosis in my intestines.

    my myco and strep titers are way down, cd57 is up, most importantly i feel great for the first time in a couple decades.
     
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  19. Elph68

    Elph68 Senior Member

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    To fire up the immune system takes a hell of a lot of energy .... CFS sufferers are starving of energy and there are papers on mitochondria dysfunction being part of the reason for the lack of energy ......

    So it just makes sense if you keep stimulating the immune system ..... something has to give when the energy supply is very limited ...... that is .... CFS CRASH!
     
  20. Elph68

    Elph68 Senior Member

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    Hi PathogenKiller .... this is great to hear ..... just be very mindful of 1 thing though .... Don't use azithro again .... the reason being if you did not take it out completely the first time the strep will be 100% resistant to azithro now ....... Do not pulse it .... what will happen is the azithro will kill off the good bacteria, allowing the strep to regain hold ......... I have papers here on this, 7 days treatment of azithro increases strep resistance to it by up to 80% .....

    To get it all .... Gentamycin/vancomycin IV ...... 2 - 4 weeks ..... Not sure which one will work best .... and chew xylitol gum flat out to stop it from coming back .....

    I am so happy to hear this :)
     

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