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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
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It's all in the Gut. Why we get ME/CFS

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by redo, Mar 26, 2011.

  1. Elph68

    Elph68 Senior Member

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    Hi Aimossy, they are coming but in the mean time, identify some symptoms relative to the IBS and treat the IBS, cure the IBS ..... put the CFS aside and get into www.cdd.com.au and tell them you want your IBS cured .... see what happens from there .....

    Probiotics don't cut it .... These bugs are now genetically stronger than any probiotic ....
  2. Elph68

    Elph68 Senior Member

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  3. Elph68

    Elph68 Senior Member

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  4. aimossy

    aimossy Senior Member

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    looks really interesting thankyou! I will check them out properly! cant get my brain cogs lined up right now.
    thanks for the links Elph68 !:)
  5. aimossy

    aimossy Senior Member

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    Those links were great reading Elph68 thankyou heaps because im not the flashest on the net!
    :):rolleyes:
  6. Adlyfrost

    Adlyfrost Senior Member

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    Hi! Just a quick update: I have eating mostly chicken bone broth soup, avocados, and taking nystatin daily. I have had tremendous success. With eliminating most carbs I had trouble at first with hormones but introduced 3mg of Boron 2-3x day along with magnesium and good oils such as fish flax and primrose- that problem is fixed. I have eliminated alot of supplements that feed the microbes- such as multivitamins and b's and iron, at least on a daily basis. My body still needs these nutrients so I take them in shots (not real shots- just large doses) 1-2x a week or whenever I feel weak. I also take an herbal candida detox, vit. C and some herbals, chocolate, fiber to help. My results so far: oral herpes lesions- totally gone! I mean nonexistent!!! Exercise TOLERANCE and caffeine TOLERANCE is back- it is amazing! I am out of bed every day- I think I can safely say I could do a part time job easily now. I am going to school and if it weren't for that and my caution in trying to get my life back on track I would have a job. I couldn't do this without the nystatin. It wasn't the cure though- The chicken broth and boron were even more important. It was really what I have NOT been eating that has made the most difference. But still there are days without the nystatin I would get a sore throat or feel myself slumping back into that old sleeping 15+ hours/day, nervous, too sick to move state. I am going to have to go doctor shopping after I run out. It is well worth it- this program I devised has been a miracle. Wish everyone here the best.
    Beyond, Sparrowhawk and aimossy like this.
  7. Adlyfrost

    Adlyfrost Senior Member

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    My theory about the Nystatin is that the candida enables other microbes. Cutting down the candida w/nystatin is just a way of helping the gut to fight and heal- by minimizing its pathogenic microbial load. I don't think I have a chronic case of canidida- I believe it is an autoimmune reaction in the gut that is brought on by biofilm that lines the entire GI from the small intstines up. This biolfilm enables harmful bacteria, fungi, parasites and viruses. Nystain puts a dent in it. But the GI is inflamed and can't heal. That is why the chicken bone broth is so important: gives it the exact nutrition to heal. But stopping the inflammation/autoimmune reaction means putting almost no solid food down the gut. That is the hard part. Ideally we would all be on IV's. But they only do that for people who can't swallow. So a mostly liquid, high protein diet is ideal. To starve the microbes- no sugars! And kill them out right (at least some) with nystatin and herbals. I agree- this is beyond probiotics - though they might be good therapy later on. I have had this since I was 11 and I am now 41. It has only gotten worse until now. I hope something I am doing works for someone else. Wouldn't wish CFS on my worst enemy.
    Beyond, Sparrowhawk and aimossy like this.
  8. Sparrowhawk

    Sparrowhawk Senior Member

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    Just got the Genova PCR test back this past week. I am showing gut disbiosis. And for the very first time -- even though other Genova tests (non-DNA testing) never showed it, there are signs of both fungal and parasite presence.

    Enterobacter is positive as an opportunistic bacteria -- butno hint as to how much/volume.
    E coli is on the high end of the scale.
    Bifido is ok but Lactobacilus is low.

    Yeast/Fungi --taxonomy unknown. Which means it's not Candida but could be from the mold infestation we've had at the house (now in remediation).

    Parasites: taxonomy unknown. Now I had a complete scope donw not a few months ago and they didn't see any parasites, so they must be in the micro category. Also, they don't match any of the ones they usuallly test for, which means I may have picked something up in the remote/rural/refugee places I've been over the past five years.

    High lactoferrin showing high inflammation in the gut but then we knew that.

    Immunology, I actually have decent Fecal sigA level for someone as sick as I have been, so says the practitioner.
    PH is acid which is interesting because my spit PH is ok.

    My enzymes have recovered from last summer, which is great to see. Absorbtion improved except for cholesterol, but again I'm eating such a high fat diet I'm not surprised at that.

    Not sure where to go with all this info. The nutritionist suggested I try a single straing probiotic like Lactobacillus, from Yasko.

    I joined a Facebook group of folks doing fecal transplants at home for things like UC and C Diff, their success is hit or miss. Seems to work for some, not others. It's unclear to me if that approach can really work unless you're getting the right small bowel stuff into the small bowel, and the large bowel stuff in to the large bowel.
  9. Elph68

    Elph68 Senior Member

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    Hi Sparrowhawk, in order for FMT to be truly successful, a long course of antibiotics is needed (for example: Gentamycin+ Doxycyclene + Azithromycin) for up to 3 months in order to kill off the bad bacteria. I know this because I have all the tests done and I am waiting for my treatment to start (fingers crossed) early December.

    You might like to read this http://www.superbugskill.com/papers/cfscure.pdf

    Cheers.
    aimossy and Sparrowhawk like this.
  10. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Sparrowhawk for lactobacilli kefir and real yogurt are good sources.
  11. Sparrowhawk

    Sparrowhawk Senior Member

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    Thanks Beyond. I'm at a point where I can't seem to do dairy. Last summer I drank a lot of raw milk and cream, my body seemed to like it. Then my entire GI tract went on vacation and not been the same since. And any dairy just doesn't work. Sprouted lentils are a great new add to my limited foods, so I'm grateful for that.
    Beyond likes this.
  12. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Sprouted sounds and looks good. Too bad I couldn´t manage to do it in my home lol I ended spoiling a lot of legumes. It seems easy in the Internet but then getting them to sprout in a jar isnt that easy. I could only make lentils sprout in a bed of wet cotton, like we did in primary school. It was very small and the water didn´t smell good at the end because you cannot change it. How do you do it?

    Fermented veggies should have a nice amount of Lactobacillus plantarum, in theory. But who knows what you are eating at the end. Have tried that and didnt feel much of a difference.
    Sparrowhawk likes this.
  13. Elph68

    Elph68 Senior Member

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    Hi Beyond,

    I know I am probably challenging everybody here .... but lactobacillus probiotics may in fact be making your symptoms worse. Lactobacillus produces H2S and lactic acid. H2S is a mitochondrial poison. It can directly inhibit enzymes involved in the cellular production of energy. H2S also inteferes with oxygen transport by blocking hemoglobin in the red blood cells. H2S is also a potent neurotoxin.... just something for you to think about ....ME patients generally have high lactobacillus counts and low e-coli ....
    Beyond likes this.
  14. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Interesting input. An overgrowth of lactobacilli will cause these problems. I know that xks201 claims CFSers have overgrowth of lactobacilli or something like that. BUT a defficiency of lactobacilli will cause other problems. If a test shows the latter, getting more lactobacilli inside makes sense. Same goes for E. Coli, which as far as I know is avaliable as a supplement.
  15. Elph68

    Elph68 Senior Member

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    The science says people with ME have overgrowth of enterococcus/streptococcus, lactobacillus, prevotella and bifidobacterium .... with low e-coli .... the medico's incompetence and the misinformation out there is amazing ... Science begets knowledge, opinion begets ignorance ....
    aimossy likes this.
  16. Daffodil

    Daffodil Senior Member

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    elpha.....it isn't just bacteria at play. something is causing the inflammation that is causing the bacteria to become imbalanced, and creating this feedback loop. I think this is HERV. this explains why they keep finding retroviral sequences but no retrovirus. it explains why people seem to get better on some treatment or other, but do not stay better. it explains why GcMAF and HIV medications sometimes help. the bacterial imbalances, leaky gut, systemic inflammation, all of it...are downstream effects.

    something has activated HERV in autism, MS, Lupus, CFS, etc etc.

    diet and probiotics can ameliorate disease process but will not stop disease. we need monoclonal antibody against the ENV protein of the HERV.
    aimossy likes this.
  17. Elph68

    Elph68 Senior Member

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    Hi Daffodil, it is good to see people who actually take an interest in all this and I am only new but the last 4 people who told me something similar to what you just put to me are now heading into court for medical negligence and misdiagnosis ..... Let me please throw all the 'opinions' out the window and let's talk about actual science ....

    1. Leaky gut is a bowel infection caused by pathogenic bacteria
    2. Leaky gut allows lactic acid, toxins and H2S to pass into the bloodstream creating all sorts of body reactions which I am quite happy to expand on if you wish (please look up acidosis and Hydrogen Sulfide poisoning) .....

    Streptococcus, Enterococcus and Lactobacillus, are, under
    aerobic conditions, able to produce amounts of hydrogen
    peroxide comparable to those released by cells of the
    immune system during the oxidative burst[15]. This additional
    source of hydrogen peroxide could help sustain,
    or even exacerbate, gut inflammation[16]. Notably, certain
    Enterococcus strains can defend themselves against the surplus
    of reactive oxygen species (ROS) by producing antioxidative
    enzymes to increase their chances of survival in
    unfavourable conditions[17]

    3. The pathogenic bacteria (and viruses) causes an inflammation with the release of cytokines such as interleukin 1a, 6, 8 etc. along with antibodies to greet the invading bacteria .... The prolonged auto-immune response then attacks internal organs such as the thyroid, pancreas, kidneys (i will further expand on this one). liver, cartilage and the nervous system.


    So why does this happen?? I am glad you asked .... Let's talk about the normal relationship ...Normal flora (bacteria) have a symbiotic relationship with their host, They are able to attach themselves to the epithelial cells via receptors, this is how the body uses the bacteria ... and how the bacteria uses the body ..... Now this is what I will call the missing link that everybody has been searching for .....

    During times of stress (ie when attacked by antibiotics) normal flora swap genetic material (plasmids) between themselves and pathogenic bacteria and the survival genes encoded within them turn on and they turn into pathogens. When they become pathogens ... they are also infectious and are able to be passed onto others via close personal contact ....

    This is why that a lot of us start off with a sore throat, vaginitis, prostatitis, urethritis or some other inflammation that when swabbed returns normal flora and antibiotics don't work ....

    I will concentrate only on enterococcus and streptococcus (viridans) or I will be here doing a thesis.

    In order for a strain to be pathogenic, it must be able to breech the epithelial layer and invade the underlying cells ... over 60% of strains contain gelatinase which dissolves the gelatin within the epithelial layer allowing the bacteria to invade the underlying cell and cause an inflammatory response ....... LTA and Lipopolysaccharides LPS are prolific causes of inflammation

    LPS function has been under experimental research for several years due to its role in activating many transcription factors. LPS also produces many types of mediators involved in septic shock. Humans are much more sensitive to LPS than other animals (e.g., mice). A dose of 1 µg/kg induces shock in humans, but mice will tolerate a dose up to a thousand times higher.[13]This may relate to differences in the level of circulating natural antibodies between the two species.[14][15] Said et al. showed that LPS causes an IL-10-dependent inhibition of CD4 T-cellexpansion and function by up-regulating PD-1 levels on monocytes which leads to IL-10 production by monocytes after binding of PD-1 by PD-L.[16]
    Bruce Beutler was awarded a portion of the 2011 Nobel Prize in Physiology or Medicine for his work demonstrating that TLR4 is the LPS receptor

    Recent studies on the pathogenicity of enterococci
    indicate that the genomes of strains that are able to
    cause tissue damage and inflammation contain a pathogenicity
    island that encodes aggregation substance (AS),
    gelatinase, extracellular surface proteins (Esp), cytolysin,
    hyaluronidase and other proteins[8,9]. Enterococci that express
    AS were found to resist phagocytosis significantly
    better than an isogenic AS-negative strain by inhibiting
    the respiratory burst of macrophages[10]. Gelatinase, a
    protease produced by enterococci, is capable of hydrolysing
    gelatin, collagen, casein, haemoglobin and other
    peptides[9]. The Esp enhance biofilm formation in E.
    faecalis[11]. Cytolysin produced by the enterococci is lethal
    for a broad range of prokaryotic and eukaryotic cells[12].
    Hyaluronidase is mainly a degradative enzyme that is associated
    with tissue damage[13].

    Your gut is like a brick wall and depending on what enzymes the bacteria is carrying, depends on how much damage it does. so, like any brick wall .... you start knocking out bricks and you start having holes in the wall .... Simple science really ...

    And the real beauty of all this is that they are happy to share their pathogenic traits with others, so then you get an army of bacteria attacking you .... I reckon that would make you sick .... makes me sick ....

    Viridans streptococcus also classed as consensual flora picks up the same enzymes and are non pyogenic (non puss forming) and always return as normal flora from a commercial lab .... So they hide in plain site ...

    These bugs are potential superbugs .... they become resistant to macroloides and doxycyclene in as little as a week .... the reason why nobody is cured is because you need 8+ weeks of multiple antibiotics to remove the offending bacteria ... short doses just build resistance as it doesn't break through the biofilms ... This Dr Demeirler treatment is the closest I have seen to a solution, but it isn't quite there and it ultimately builds totally resistant superbugs ....

    probiotics don't work as the bacteria aren't attached to the receptors, they are inside the cells .... the role of probiotics is to take over the receptors and supposedly stopping the pathogens from being able to hook up ..... WRONG!!!! The nasties are living in the cells and can't be shifted .... Bugger :/

    Your sore throat, vaginitis, sore eyes, prostatitis, rosacea, and sore bowel are from an infection with bacteria that have turned against you but have slipped under our medical professions radar .... And I can scientifically prove it .... It has been proven in the literature already ....

    Your theory may be right, except for the leaky gut part .... but I am going with the scientific facts, and I know I will feel much better when my gut is fixed ....

    BTW .... how do I know this .... because after 3 years of prostatitis and chronic sore throat, I put saliva on my finger and stuck it up my rectum ... within a week I had severe IBS .... and now I am having a complete auto-immune system breakdown .... But I have normal flora ....

    And the reason women have higher incidence of IBS and CFS .... it is because bacteria escape from the vagina and run into the anus in fluids .... and I am not going into how pathogenic mouth bugs could get into a vagina in an open forum .... My 8 year old daughter has had a chronic sore throat and swollen glands in her neck for the past 2 years .... When her vagina started burning like her mums ... I lost my sense of humour .... doxycyclene + azithromycin stopped it finally ..... same for my wife .....

    Fire your questions .... I have over 50 papers here that supports what I have just put here ....
  18. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    No. A wide array of agressions to the gut lining and/or health conditions can cause intestinal "leakiness" and inflammation. Pathogenic bacteria is only one of them.
    South likes this.
  19. Elph68

    Elph68 Senior Member

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    Hi Beyond ... I am open .... Viruses and parasites yes .... what else??
    aimossy likes this.
  20. Daffodil

    Daffodil Senior Member

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    are you saying you got CFS by sticking your saliva up your butt?
    Victronix and Beyond like this.

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