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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. Glynis Steele

    Glynis Steele Senior Member

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    If you physically did an afternoon test (peed in the pot in the late afternoon or early evening :D) then I would presume that you do not have high d-lactate. If you tested with morning urine, there still might be a question mark as to whether you have high d-lactate.

    I am not sure where in the world you are, here in the UK you can test for d-lactate at Biolab in London, and in the US Metametrix test, but you must remember to supply an afternoon or early evening sample, rather than a morning sample.

    BW

    Glynis x
     
  2. redo

    redo Senior Member

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    It's fascinating to see the table below. Time and time again I hear of people who improve after taking those antibiotics, and in those combinations.
    www.freepatentsonline.com/7048906.html
    I am feeling awful now, and I might give amoxicillin or metronidazole a try.
     
  3. ukxmrv

    ukxmrv Senior Member

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    The antibiotics made my gut much worse, Redo. You could end up with even more gut problems. It's a huge problem knowing what will help and what will harm.
     
  4. redo

    redo Senior Member

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    Yes, it's no way to know beforehand. Important to point out.

    I've slid much further downhill with doxycycline treatment. Losing sensation, getting much worse generally.

    And, also important to point out, I am not specifically talking about GI problems, but multi systemic symptoms arising from microbes in the gut. I haven't had noteworthy GI symotoms before.
     
  5. redo

    redo Senior Member

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    Come to think of it. Three of my three last relapses/setbacks have been stress induced.

    One where I was in a large family gathering, my vision got a lot poorer afterwards ++.

    One after I did some anti virals, but the large relapse didn't come until there was a lot of stress with some samples I had to get done.

    One after some doctors meetings and a gathering in a city far away, a lot of traveling, and then a relapse.

    These relapses have lasted, and a lot of the problems I have got as a concequence have stuck.

    Looking at the link I posted above, it seems the gut can change pretty quick due to stress.

    I am pretty sure it's in the gut. One, or most likely several microbes which are causing all the havoc in our bodies.

    Important to point out, antibiotics can be a double edged sword. I've got worse after using some antbiotics, especially in the tetracycline class.
     
  6. Waverunner

    Waverunner Senior Member

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    The problem is the combination of bacteria in the gut. If you have lots of pathogenic bacteria it definitely will help to lower them with antibiotics. The problem is that you hammer all bacteria, also the friendly ones. In the end I think it is decisive whether the effects of the bad bacteria are dominant or the effects of the friendly bacteria. In the first case the antibiotics should help in the second case you could make it worse. The antibiotics are not selective enough so there always is a trade-off.
     
    sianrecovery likes this.
  7. redo

    redo Senior Member

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    It depends on how you define selective. Some antibiotics are broad spectrum, some are narrow, some only work on anaerobic bacteria, some not.

    Taking antibiotics per se, does not kill off all bacteria in the gut - regardless of lenght. But some antibiotics are more effective at eliminating what's there.
     
  8. Waverunner

    Waverunner Senior Member

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    I agree. Moreover antibiotics most of the time are accompanied by an anti-inflammatory effect which is very positive for CFS. However there are several problems:

    1) Do we know how a normal or even a CFS beneficial gut flora looks like? It contains no pathogenic bacteria for sure but which bacteria are really good for us?
    2) Do we do tests which not only tell us the different bacterial counts for each strain but also if they are located at the right place in the gut?
    3) How do you correct growth problems? Many PWCs have problems with probiotics, why? De Meirleir is one of the lead scientists in the field but even he has huge problems to not only check for bacteria but to correct them. How does the gut return to normal and what hinders it to do so? Viral infection?
     
  9. redo

    redo Senior Member

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    We don't know what a good gut flora looks like. But one thing we do know is that it's vastly different from person to person. That's why fecal transplants often have better results when done from a relative

    A healthy gut flora may very well have pathogenic bacteria. In fact most of healthy people have that, it's only a matter of amounts.

    Which bacteria are good for us. Good question. Many get (somewhat) better when taking VSL#3, some get worse. Same with mutaflor. So if we had a way to find that out, we'd be long way.

    How do you correct growth problems?
    I think fecal transplantation will be very effective. First kill of everything one can (with abx), then do a colon cleansing, and then the transplant (standard procedure). I don't know of other effective ways.

    How does the gut return to normal and what hinders it to do so? Viral infection?
    Very good question. I think viral infections (or other infections) may be the root cause why the gut is out of control, unable to get the right balace of gut bacteria. I hope I am wrong, but I think it's so.
     
  10. dannybex

    dannybex Senior Member

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    Hi Redo,

    I think your theory makes a lot of sense, and as pointed out is backed up by the work of De Melier, and others. It would be great if there was better access to these fecal transplants, as odd as that may sound.

    I don't know if you've seen mojoey's posts, but his gut was in a mess, going downhill rapidly, but has found improvement over the last month or so by making water kefir. I think he's also doing LDN. But he had tried practically every brand and every dose of probiotics prior to this, with no success. (He's also avoiding mold in his environment). Fungal infections, or just food with high-fungal or mold content, might also be an issue for some.

    I saw you mention Cipro a page or so back. I personally avoid that like the plague, ever since a pharmacist warned me about it's connection with spontaneous tendon ruptures.

    http://www.webmd.com/news/20080708/fda-warning-cipro-may-rupture-tendons

    I would also suggest posting elsewhere about your neuropathy -- you might find some answers...?

    Best regards,

    Dan
     
  11. Shellbell

    Shellbell Senior Member

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    I would also like to mention that even though fluoroquinolone antibiotics (cipro, levaquin, etc) are black boxed for tendon ruptures only, they also cause more systemic damage if you have an adverse reaction to them. There are groups, including lawyers, who are trying to get the FDA to include much more on the black box warning. My ADR to cipro is what changed my life overnight 4 years ago, destroying my immune system, gut, and nervous system. I know of many others just like me. Use cautiously!!!

    Shellbell
     
  12. redo

    redo Senior Member

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    Although I can only guess what the content of this study is, I think this may fall very well in line with the gut hyopthesis. After all the intestines are a large mucosal site. In HIV-1, the gut is a important reservoir.

    XMRV replicates preferentially in mucosal sites in vivo: Relevance to XMRV transmission?
    http://www.retrovirology.com/content/8/S1/A219
     
  13. redo

    redo Senior Member

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  14. free at last

    free at last Senior Member

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    Just wanted to say i think there is a connection, im not sure what it is, but there is a connection. I had a lot of stomach trouble during my worst times. Sometimes still do. I also noticed times i would get more fluey type symptoms. i had bad breath, that seemed to come from the stomach. when the symptoms improved. that went away. each and every time. coincedence ? i dont think so. One thing i constantly did during symptom flares. was eat lots of salad veg, green leafy veg. bright red colours tomatoes peppers. beetroot. celery. you name it. i tried it. also every time with these meals raw garlic. this seemed to have a very cleaning effect on my system and stomach. it was my way ( my only way) of fighting back against the fluey symptoms, and the bad stomach involvement.

    I also took multi vits. hi Strength vit c. magneusim calcium evening primrose. Dr Kilmas latest research showing the enzyme problem, affecting food absorbtion. and affecting the immune system. seems to tie in with all this quite nicely.

    its something ive been saying for ages on this forum, right from my introduction some may recall. so little did i know. maybe what i was doing back then. was actually helping the problem, reported recently by dr Kilmas. and the gut problems mentioned here. which i belive is connected.

    I hope in some way that possibly what i have been saying all along. can be seen in a new light, after dr Kilmas latest food enzyme immune inbalance research. It feels that way to me. is it part of the truth ? is it very important ? ive been saying for a long time it is. Just maybe its actually starting to look like my advice might be more important than we would intially have belived.

    Its only vitamins and complex vegetable vitamins right ? maybe not. i might be wrong. but i have been telling the sickest to go on this regime. not because im qualified ( and yes that worrys me) but because, it just seemed so right, so instinctively right. and seemed ( over a long period of time ) to actually help pull me out of the clutches of ME CFS.

    was it perfect no. is it still perfect no. is it a cure ? likely not. will it improve your health a lot over say 5 years of doing this ? I belive it will. and maybe the things we are dicovering in 2011, are actually showing why it helped so much.

    To me thats exciting. because it means i did the right thing. when i felt so terribly ill. and everyone can do similar. if it doesnt work for you. over a long period of time. im sorry. I know the hell that is ME /CFS but it cant make you worse.

    I know some will say i cant tolerate this, and i cant tolerate that. find the things you can tolerate, natural vitamin explosions. as many different types as you can find all on the same plate. with fish, protien and meats. keep doing it, evertime you flair up. my only hope is someone will get out this nightmare. just a bit, to have some of a life again
     
  15. mingo

    mingo

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    Yeah, It's the gut.

    All the efforts going into sequencing the microbiome seem like they are going to pay off big:
    http://commonfund.nih.gov/hmp/

    Here's pretty good news for those with IBS:

    http://www.sciencedaily.com/releases/2011/05/110517110315.htm

    Gut Bacteria Linked to Behavior: That Anxiety May Be in Your Gut, Not in Your Head
    enlarge

    Rendering of bacteria. For the first time, researchers at McMaster University have conclusive evidence that bacteria residing in the gut influence brain chemistry and behavior. (Credit: Irochka / Fotolia)
    ScienceDaily (May 17, 2011) For the first time, researchers at McMaster University have conclusive evidence that bacteria residing in the gut influence brain chemistry and behaviour.
    The findings are important because several common types of gastrointestinal disease, including irritable bowel syndrome, are frequently associated with anxiety or depression. In addition there has been speculation that some psychiatric disorders, such as late onset autism, may be associated with an abnormal bacterial content in the gut.
    "The exciting results provide stimulus for further investigating a microbial component to the causation of behavioural illnesses," said Stephen Collins, professor of medicine and associate dean research, Michael G. DeGroote School of Medicine. Collins and Premysl Bercik, assistant professor of medicine, undertook the research in the Farncombe Family Digestive Health Research Institute.
    The research appears in the online edition of the journal Gastroenterology.
    For each person, the gut is home to about 1,000 trillion bacteria with which we live in harmony. These bacteria perform a number of functions vital to health: They harvest energy from the diet, protect against infections and provide nutrition to cells in the gut. Any disruption can result in life-threatening conditions, such as antibiotic-induced colitis from infection with the "superbug" Clostridium difficile.
    Working with healthy adult mice, the researchers showed that disrupting the normal bacterial content of the gut with antibiotics produced changes in behaviour; the mice became less cautious or anxious. This change was accompanied by an increase in brain-derived neurotrophic factor (BDNF), which has been linked to depression and anxiety.
    When oral antibiotics were discontinued, bacteria in the gut returned to normal. "This was accompanied by restoration of normal behaviour and brain chemistry," Collins said.
    To confirm that bacteria can influence behaviour, the researchers colonized germ-free mice with bacteria taken from mice with a different behavioural pattern. They found that when germ-free mice with a genetic background associated with passive behaviour were colonized with bacteria from mice with higher exploratory behaviour, they became more active and daring. Similarly, normally active mice became more passive after receiving bacteria from mice whose genetic background is associated with passive behaviour.
    While previous research has focused on the role bacteria play in brain development early in life, Collins said this latest research indicates that while many factors determine behaviour, the nature and stability of bacteria in the gut appear to influence behaviour and any disruption , from antibiotics or infection, might produce changes in behaviour. Bercik said that these results lay the foundation for investigating the therapeutic potential of probiotic bacteria and their products in the treatment of behavioural disorders, particularly those associated with gastrointestinal conditions such as irritable bowel syndrome.
    The research was funded by grants from the Canadian Institutes of Health Research (CIHR) and the Crohn's and Colitis Foundation of Canada (CCFC).
     
  16. redo

    redo Senior Member

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    mingo. Fascinating! Thanks for posting.
     
  17. Waverunner

    Waverunner Senior Member

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    The question is how we influence the intestinal flora? Is there any form of diet that promotes growth of healthy bacteria?
     
  18. mingo

    mingo

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    More news on microbiome and IBS:
    IBS Microbes

    http://www.secondgenome.com/2011/03/ibs-microbes/

    Aleksandar Milosavljevic and colleagues Baylor School of Medicine in Houston, TX announced their findings from a study of children with Irritable Bowel Syndrome at the International Human Microbiome Congress March, 2011 in Vancouver. Below is a description adapted from their abstract.

    Microbial Signatures Present in the Gut Microbiomes of Pediatric Irritable Bowel Syndrome

    Authors: Milosavljevic, Aleksandar; Petrosino, Joseph F.; Coarfa, Cristian; Versalovic, James; Riehle, Kevin; Diaz, Maria?Alejandra; Raza, Sabeen; Mandal, Debasmita; Weidler, Erica M.; Qin, Xiang; Saulnier, Delphine M.; Mistretta, Toni?Ann; Gibbs, Richard; Lynch, Susan V.; Shulman, Robert J.

    The intestinal microbiomes of healthy children and pediatric patients with irritable bowel syndrome (IBS) are not well defined. However, previous studies in adults suggest that the gut microbiota may be involved in IBS.
    A total of 71 samples from 22 children with IBS and 22 healthy children, ages 7?12 years, were analyzed by 16S rRNA sequencing followed by inter-sample comparison with phylogenetic?based clustering (Unifrac) and a supervised machine learning tool (Random Forest). The majority of samples were also hybridized to a microbial population tracking microarray (PhyloChip assay). Comparisons of the healthy pediatric and adult microbiomes were performed with a subset of adults sequenced via the HMP consortium.
    IBS?associated microbiomes were characterized by a significantly higher percentage of the class Gammaproteobacteria (.07% vs 0.89% of total bacteria; P <.05). Differences highlighted by 454 sequencing were confirmed by PhyloChip analysis. Using supervised learning techniques, we were able to classify different Rome III subtypes of IBS (e.g., IBS?constipation predominant) with a success rate of 98.5% using limited sets of discriminant bacterial species. A higher severity of pain was correlated with greater abundance of an OTU having 99% identity with Alistipes putredinis using Random Forest analysis.
    This study suggests that 16S rRNA profiling identifies pediatric IBS disease?associated signatures and proposes important associations between commensal microbes and IBS in children.
     
  19. redo

    redo Senior Member

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    Perhaps this is why so many of us get worse from alcohol:

    Alcohol exposure can promote the growth of Gram-negative bacteria in the intestine, which may result in accumulation of endotoxin. In addition, alcohol metabolism by Gram-negative bacteria and intestinal epithelial cells can result in accumulation of acetaldehyde, which in turn can increase intestinal permeability to endotoxin by increasing tyrosine phosphorylation of tight junction and adherens junction proteins.

    www.alcoholjournal.org/article/S0741-8329(08)00203-6/abstract
     
  20. redo

    redo Senior Member

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