Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Discussion in 'General ME/CFS Discussion' started by JollyRoger, Jun 18, 2017.

  1. JollyRoger

    JollyRoger Senior Member

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    Many, but not all, patients with mitochondrial diseases have chronic fatigue but, in all likelihood, only a small fraction of those with CFS have a mitochondrial disorder.

    But how can I distinguish them?

    Every "version" can come after an infection or stress.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4748504/

    Here's a case of someone who got the wrong diagnosis cfs.
     
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  2. sjaakafhaak

    sjaakafhaak

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    I am struggling with this as well, I am in 'limbo' as to whether I even have cfs. However, there are very few alternatives that fit this deliberating fatigue. I think I don't have actual PEM or it is relatively mild that I don't notify it as such.

    However, MitoDiseases, especially adult onset appears to have 'vague', different symptoms per case as well and I don't seem to fall well in that box also.
     
  3. Valentijn

    Valentijn WE ARE KINA

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    In genetic mitochondrial disease there would usually be some other weird symptoms which aren't typical for ME/CFS: thyroid problems, diabetes, hemiplegia/hemiparesia, seizures, certain eye problems, etc. A maternal family history of various symptoms might also make genetic mitochondrial disease a more likely culprit.
     
  4. JollyRoger

    JollyRoger Senior Member

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    The case in the link was at my age and with my symptoms.


    fatigue for more than 10 consecutive months, being more evident as the day progressed, and did not improve with bed rest and worsened with physical and mental effort, significantly interfering with daily activities and work. He also reported that was accompanied by unrefreshing sleep, impairment in short-term memory and concentration, together with headache behind the eyes and in the back of the head and postexertional malaise that lasted more than 24 hours.



    These symptoms began approximately 6 months after the diagnosis of infective endocarditis of the native valve with negative blood cultures, treated successfully with antibiotics, replacement of the aortic valve, and oral anticoagulation.
     
  5. ljimbo423

    ljimbo423 Senior Member

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    I believe my cfs was caused primarily by many, many courses of antibiotics, that lead to dysbiosis and a leaky gut. Here is a paper that explains how lipopolysaccharides (LPS) cause a "Warburg effect". The Warburg effect is VERY similar to what Robert Naviaux calls the "cell danger response" (CDR). Here is a quote from the paper-

    Naviaux believes the CDR is the reason our mitochondria are dysfunctional, causing symptoms. I believe it's the LPS from the gut, that is causing the CDR and therefore the symptoms in cfs from that.

    Our digestive tract has many gram negative bacteria in it. They have LPS in there cell membranes that can get through the gut wall, if it is hyper-permeable or "leaky" from dysbiosis. Here is a study that explains how dysbiosis can cause a leaky gut-

    LINK

    The research is very clear that LPS cause significant immune system stimulation, even at very low doses. It doesn't seem like a big stretch to me, to think that they are activating the immune system, causing the CDR and therefore symptoms. Something you might want to think about?:)
     
    Last edited: Jun 18, 2017
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  6. JollyRoger

    JollyRoger Senior Member

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    Bit he had a positive muscle biopsy.
    That's the problem-is it primary and worsened through a infection or false treatment or is it secondary????
     
  7. ljimbo423

    ljimbo423 Senior Member

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    I think his case is a very rare one and we are very unlikely to see this in the vast majority of people with cfs. I think the mitochondrial dysfunction in cfs is secondary to the cell danger response, as Robert Naviaux has stated. Also, Ron Davis found that there is something in the blood of cfs patients, causing the mito dysfunction, not mitochondrial mutations.

    When they put dysfunctional cells of cfs patients in with blood from healthy people, the mitochondria function normally. That makes it very clear that there is something in our blood causing the mito dysfunction. I believe that something is LPS, from a leaky gut for most.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    I am not certain if CFS is my diagnosis either and have pretty much reached the point where it no longer matters to me. I am treating my symptoms and they are improving and as much as I would like to have a clear label, I don't think I am going to get one (besides POTS and MCAS which are 100% diagnosed). The rest of it is an odd combination of autoantibodies and symptoms that many doctors would label "CFS" and be done with me but others are willing to dig deeper. So in the end, I am still not sure.
     
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  9. Hip

    Hip Senior Member

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    I have never come across any research linking antibiotic use to triggering ME/CFS.

    Although fluoroquinolone antibiotics can sometimes trigger fluoroquinolone toxicity syndrome, which has ME/CFS-like symptoms (possibility through a mitochondrial toxicity mechanism).
     
    Last edited: Jun 19, 2017
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  10. ljimbo423

    ljimbo423 Senior Member

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    That's a very good point, I don't think I have either. Maybe research into that kind of a link, could provide some very useful information, I believe it can.There is research connecting leaky gut and cfs symptoms.

    Maes has done at least one study, maybe more and there are others also. So the only other connection to be made, is to connect antibiotic use to dysbiosis and a leaky gut.

    My view is that dysbiosis without question, can cause a leaky gut and antibiotics are often the number one cause of dysbiosis. There are also many other factors that can cause or contribute to a leaky gut.

    I was tested for and found to have severe dysbiosis.
    There is very little doubt in my mind that my servere dysbiosis was caused by about 40 courses of antibiotics over many years, which lead to a leaky gut and my cfs.

    I believe that you have a different view of the pathogenesis of cfs, so I don't expect this post to win you over to my view.:D ;)
     
  11. Hip

    Hip Senior Member

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    I don't have my own view as such, I just follow what the ME/CFS researchers have found in terms of probable causal factors and associations. Generally it is viral infection that is observed to trigger ME/CFS, especially with enteroviruses and EBV. More rarely, vaccination sometimes appears to be a trigger.

    Dr Chia has also noted that the combination of: acute viral infection + corticosteroids is almost a recipe for creating ME/CFS (possibly linked to the corticosteroid immunosuppression).


    It's possible that pre-existing conditions such as IBS, with the leaky gut that often comes with it (39% of those with diarrhea-predominant IBS have leaky gut; ref: 1), might be risk factors that increase the likelihood of getting ME/CFS from triggers such as viruses or vaccines.

    Intestinal dysbiosis might I guess also be such a risk factor, that may make getting ME/CFS more likely.

    Although I cannot find any studies that found leaky gut in dysbiosis cases, so I am not sure where you read that these are linked. Certainly some specific bacterial infections in the gut have been linked to creating leaky gut (such as the bacteria listed in this post), so if you had dysbiosis with those particular bacteria, then leaky gut might ensue.
     
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  12. ljimbo423

    ljimbo423 Senior Member

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    If you do a search for LPS (which would be from dysbiosis) and intestinal permeability, you will find several studies showing that lps in the gut, can cause a leaky gut. I'll post a study or two tomorrow. It's just about time to call it a night.:sleep:
     
  13. kangaSue

    kangaSue Senior Member

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    The study here also did tests to rule out a number of other conditions that can cause similar symptoms.

    Antinuclear antibody (ANA), anti-Ro (SSA) and anti-La (SSB) as part of an ENA panel are looking for Sjogren's Syndrome, Scleroderma or other connective tissue disorders and anti-neutrophil cytoplasmic antibodies (ANCA) is looking for Vasculitis so a starting point for anyone identifying with having similar symptoms would be to have these tests done to rule out these which are more common autoimmune causes.
     
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  14. Valentijn

    Valentijn WE ARE KINA

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    In ME patients, I think it may turn out to be both. Misdiagnosed genetic mitochondrial diseases for some, mitochondrial disease from autoimmunity for others, and maybe CDR or similar for some as well, etc. And genetic mitochondrial disease can be worsened by both infections and by the wrong antibiotics or other meds.

    Has that been published, or is it just what someone is saying thus far? And Julia Newton, when culturing muscle cells from patients, found that they produced a pretty huge amount of lactic acid, which seems to contradict that claim of cells in healthy blood behaving normally. But again, they could both be right - in different patients.
     
  15. ljimbo423

    ljimbo423 Senior Member

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    ljimbo423 said:
    When they put dysfunctional cells of cfs patients in with blood from healthy people, the mitochondria function normally.


    I don't know if that's been published or not. Yes, there are many contradictions in the research, that's one thing, of many,:):confused: that makes it so hard to piece things together and make sense of the larger picture.
     
  16. ljimbo423

    ljimbo423 Senior Member

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    It's the LPS from gram negative bacteria, from the dysbiosis, that causes the leaky gut. The CDSA test I had done, not only found severe dysbiosis, but also high levels of Pseudomonas Aeruginosa. A gram negative bacteria that is HIGHLY antibiotic resistant.

    Many gram negative bacteria in the gut are very antibiotic resistant. Probiotic bacteria on the other hand are generally much more sensitive to antibiotics, so they are the first killed off from antibiotics. Leaving the antibiotic resistant, gram negative bacteria, to overgrow, causing dysbiosis and a leaky gut from the LPS in their cell membranes.

    Here is one study showing how LPS can cause a leaky gut-

    LINK

    There are other studies here if you are interested.
     
  17. Hip

    Hip Senior Member

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    I don't think LPS is a potent leaky gut creating factor. If it was, you might expect that everyone would have leaky gut, as Gram-negative bacteria are very common gut inhabitants. But certainly if there is a large population of Gram-negative bacteria in the gut, then possibly more LPS may be present. I would imagine that to have significant gut leakiness, you would have to be exposed to several factors that promote leaky gut.

    I have in the past speculated that LPS in the bloodstream may make it harder for the body to fight off viral infections, since LPS shifts the immune response to Th2. Ref: 1

    In my own case, I had the highest level (level 4) of a potentially pathogenic bacteria (Proteus mirabilis) in my gut in my Genova Diagnostics Comprehensive Digestive Stool Analysis 2.0 test; and I also have IBS-D, which is linked to leaky gut.

    If we assume that leaky gut allows LPS to enter the bloodstream, then the Th2 shift it produces may possibly have made it more difficult for my immune system to fight off the coxsackievirus B I caught.

    However, I have not come across any study which provided evidence that leaky gut leads to the translocation of LPS into the bloodstream. I have seen a few alternative health articles state that leaky gut facilitates LPS translocation, but they don't provide any references for this assertion.

    LPS is a large molecule (100,000 Daltons), so perhaps this molecule just cannot pass through even a leaky gut.
     
  18. ljimbo423

    ljimbo423 Senior Member

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    The level of Pseudomonas Aeruginosa found in my cdsa, done by the same company, was also a level 4 pathogen. Pseudomonas Aeruginosa has a very toxic exotoxin similar to diphtheria.

    LINK


    Here is a link to a study that shows translocation of LPS from the gut-
    The gut-brain barrier in major depression: intestinal mucosal dysfunction with an increased translocation of LPS from gram negative enterobacteria (leaky gut) plays a role in the inflammatory pathophysiology of depression.


    ETA- Here's another study on cfs and translocation -

    These findings suggest a role for an altered gut microbiome and increased bacterial translocation following exercise in ME/CFS patients that may account for the profound post-exertional malaise experienced by ME/CFS patients.
     
    Last edited: Jun 19, 2017
  19. Hip

    Hip Senior Member

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    I know that study: it does not measure LPS in the blood, but rather measures increased levels of IgM and IgA against LPS. I don't know that much about these issues, but that does not seem like much proof to me that LPS can translocate from the gut to the bloodstream.

    A few years ago I was looking for evidence that LPS can translocate, but could not find any.
     
  20. ljimbo423

    ljimbo423 Senior Member

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    Respectfully, I don't believe I could show you enough proof, because you don't believe LPS translocation is true. I hope you don't take that as a criticism, that's not my intention, that's what I believe to be true.

    It took me 10 years and many, many, many thousands of hours of research to be able to come up with a theory that made sense to me and continues to make sense to me, even though I still look for possible alternatives to it.

    If I can make better sense of a different theory, I will hop on that bus in a hurry!:)
     

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