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Need a gut education

Discussion in 'General ME/CFS Discussion' started by Jpac, Apr 1, 2018.

  1. Jpac

    Jpac

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    So, I have been dealing with excessive burbing and being bloated almost from the onset of my illness. It’s always been manageable. All of a sudden is the bloating is not manageable and my appetite has suffered. So here are my questions...

    - is dysbosis part of Gastroparesis or totally different?
    - is the treatment basically the same for both?
    - is there a way to figure it out without any invasive tests? Those always seem to push me in he wrong direction.
    - if dysbosis is a stand alone condition what would one recommend in addition to diet?

    Joe
     
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  2. LINE

    LINE

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    The gastrointestinal tract is actually a dynamic organ system, in other words, more than just waste system. More than 70% of the immune system resides in the gut. Dr. Leo Galland is a MD who treats M.E. patients and has many great articles at mdheal.org. He states that when ME patients come to him, the first place he looks is in the gut and he is looking for pathogens. The GI tract would be the most suspectible to infection and Galland believes that is why there is a majority of the immune system is there.

    The gut is a very diverse organ which has a plethora of organisms residing in it (e.g. bacteria, yeast, and many other organisms), this is known as the microbiota. The gut is also a symbiotic environment (unless you are sick) which means all that diversity co-exists and has mutual relationships. When an organism becomes dominant and it is a pathogen, then the immune system will kick in to control the situation. Activation of the immune system generates all kinds of issues such as higher oxidative stress etc. Immune activation in the gut also leads to "leaky gut" which creates more inflammation, inflammation leads to other issues (taxes a number of systems).

    It can be sometimes difficult to find out what the gut is dealing with, so testing may be hit or miss. There are some stool culture tests you can do but some of these become analysis paralysis, sometimes the results can be clear.

    Most groupings are bacteria (gram negative and gram positive), yeast/fungal, parasitic which can include protozoa species. For myself, I address it with natural methods. For instance, I would decrease sugars which can feed certain species, I would remove fresh dairy because if you have an infection, you likely have a secondary lactase deficiency. Aged cheeses are ok meaning they have less lactose. I would also increase fresh vegetables which will help cultivate healthy bacteria, I make sure they are sanitized to decrease the risk of other possible pathogens. I might try some kefir which seems to work best, I try apple cider vinegar or other fermented foods which could increase healthy bacteria and colostrum which also acts as prebiotic. You could find that these last items may not work.

    I increase natural antibiotics such as garlic, oregano, black seed, drink chai tea (which has many natural antibiotics), coconut oil, curry spices (Sharwood's has about 8 spices that are all antibiotic).

    I find that using a wider spectrum of treatment is more effective. The reason for this is that not all pathogens are created equal, meaning that substance A may kill pathogen X, but may not be effective against pathogen Y, so by increasing the spectrum of natural antibiotics, my chances increase. If a substance is effective, then you should see some results by days 7 to 10.

    The information should be considered educational and not a diagnosis or a guide to treatment. Please consult your healthcare professional.
     
    Last edited: Apr 2, 2018
  3. ljimbo423

    ljimbo423 Senior Member

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    I think @LINE has answered these questions extremely well. The only thing I would like to add is how important it is to support mitochondrial function.

    The lower your level of functioning, the more important I think it is to support your mitochondria.

    Coq10 is often very helpful for that and is usually dose dependent. Meaning you might need several hundred milligrams for it to really help you.

    I think "LINE" has nailed it on the head though. I am quite certain the root of my CFS is gut problems. Dysbiosis, causing leaky gut, causing mitochondrial dysfunction, causing my CFS.

    Jim
     
  4. LINE

    LINE

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    Thanks for the compliment - yes you are correct, infections cause metabolic changes which alter how the cells function. Nutrients are lost under this stress which further taxes the system. B vitamins are of particular note.
     
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  5. Jpac

    Jpac

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    Thanks, that’s certainly a lot of information to digest....ha. Very helpful.
     
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  6. overtheedge

    overtheedge Senior Member

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    I've had something similar in the past, when I first developed CFS I had bloating, especially around big meals, and endless burping, as well, and, I don't know if you have been dealing with anything like this, but I also had severe chronic constipation at the time. I ended up having a need for either digestive enzymes or stomach acid, stomach acid in the form of Betaine HCL. When I started taking these supplements the aforementioned gut symptoms that had been plaguing me for years improved drastically in a matter of days and kept on revving up their improvement until they hit a peak months later. The CFS took a bit longer, maybe 5 months, but it too went away for the most part after several months, though, how I came to have CFS again is another story

    Here is a post I wrote up on this stuff if you want more info on what I have recommended
    http://forums.phoenixrising.me/inde...ain-just-no-movement.42634/page-3#post-867103
    I'd especially advise you to read it if you decide to try anything to raise stomach acid as there is a need for caution when working with such things
     
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  7. Jpac

    Jpac

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    Very helpful. Thank you. It’s amazing what my stomach reacts to. I can eat pasta and chips with very little discomfort, but bite into an apple....Instant bloating. Since I have posted this a week or so ago I have been advised to take an antacid, acid, probiotic, prebiotic, try fasting, eat nothing but fruit...it goes on and on. I guess I’m just venting. I’m assuming I need trial and error like everyone else. Thanks!!
     
  8. ljimbo423

    ljimbo423 Senior Member

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    Apples are high in FODMAPS.

    FODMAPS often cause bloating in people with small intestine bacterial overgrowth (SIBO). SIBO is very common in the general population and even more common in CFS.

    I understand your frustration. Trial and error truly is the best way to go though. I still often get very frustrated because not only does what works very from person to person. Even the research very often contradicts itself!!

    Jim
     
  9. LINE

    LINE

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    No pun intended I presume :)

    Yes, trial and error to try to correlate what is going on. overtheedge brings up a very good point, digestive enzymes play a key role. There are both stomach enzymes (HCl and pepsin) as well as the pancreatic enzymes which digest fats, starches, proteins, cellulose and others. Best guess is the apples may require more pancreatic enzymes (cellulose) or the sugar (fructose) is feeding the infection.
     
  10. overtheedge

    overtheedge Senior Member

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    I've attached a file that has helped me, it's a list of low and high fodmap foods, found it a while back on the website of Dr Allison Siebecker. The strange thing is I feel remarkably better when eating certain foods and for some reason all of those foods are high in fodmaps: broccoli, mushrooms, sugar snap peas, zucchini, and grapefruit, though, the effect doesn't kick in till close to two hours after consumption strangely enough. I should also state I'm on the SCD diet and have only noticed these reactions since starting it, have been eating very low carb since starting the SCD and didn't realize it until a week or two ago so maybe it has something to do with that, feeding the microbes in the gut in the place of carbs or something, too early to say since I've only started getting enough carbs in the last few days


    I can't remember how far the fodmap diet goes removing high calorie foods, I know it restricts grains so that alone will take out a good bit. I restricted fodmaps for a month or two while still being on the SCD but didn't notice any real change. Not getting enough calories has been an issue for me and can by itself cause fatigue and other sickness like symptoms, but I've also been on the SCD so I don’t know what the fodmap diet alone would be like, if you would naturally be getting plenty of carbs or not. Something to pay attention to in case you go that route.


    Also, a heads up, the fodmap diet is a short term thing, I've heard it's unsafe to stay on it for too long as fodmaps are important for gut health. I want to say the fodmap diet lasts 8 weeks or so but can't say for sure, at some point you begin testing to see which fodmap foods you can tolerate and which you can't.


    The SCD diet i've been mentioning is supposed to be for starving out SIBO by eliminating polysaccharides which are hard for some to digest, especially those with weakened or damaged guts. The theory of the diet is that what is unable to be digested is just left there in the small intestine where microbes can use it as a food supply, there aren't supposed to be microbes in the small intestine btw. I’ve been doing better healthwise on this diet than any other time since the CFS started messing with me years ago. From what I've heard though, if you have SIBO, you will probably need an antibacterial to get rid of it, diets would take over a year on their own to eliminate it if they would at all. My doc Rx'd me Xifaxan recently which I plan to start soon, it seems to come up in just about every SIBO article


    Another thing, bone broth comes up a lot in relation to gut health, been meaning to make some, what I have found however is gelatin and hydrolyzed collagen which are almost the same as bone broth, only they are a bit less broken down. The collagen is a bit more broken down than the gelatin and so easier to digest from what I’ve read, I’m thinking there is something to that as I feel strongly good right after taking collagen while gelatin gives me only about half so much boost if that. I’m hoping bone broth will take it even further but only time will tell.

    Take care
     

    Attached Files:

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  11. ljimbo423

    ljimbo423 Senior Member

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    I was struggling to take even the tiniest of doses of antimicrobial herbs to treat my sibo/dysbiosis. I would get a horrific worsening of symptoms from the bacterial die-off (lipopolysaccharides).

    It was 2 courses of Xifaxan, a total of 25 days, at 1,200 mg a day that dramatically changed that. Rate after I finished the first course I was able to go up to a good dose of antimicrobial herbs to treat the sibo/dysbiosis.

    That was a year ago and I have consistently improved since then and still am. I don't feel or act like the same person I was a year ago!! :thumbsup: I'm not 100% yet but my quality of life is dramatically better!

    I was on the combination FODMAP/SIBO diet for 5-6 months before I started adding in fodmaps and small amounts of white rice and white potatoes, which are very easily digested and absorbed. It's a very strict diet but it worked for me.

    I highly encourage you to continue to treat your gut for as long as it takes. I spent 10 years, half heartedly treating my gut on and off, with little to no results.

    I have learned that I needed everything in place, long term, to make big improvements. By everything I mean, low carb diet, high dose probiotics, high dose antimicrobials and supplements to heal the gut, like glutamine, colostrum etc, LONG TERM.

    Not having everything in place for at least a year is why I continually failed to have any big improvements and why it has taken me 11 years to have such big improvements!

    Jim
     
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  12. LINE

    LINE

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    Another thing, bone broth comes up a lot in relation to gut health, been meaning to make some, what I have found however is gelatin and hydrolyzed collagen which are almost the same as bone broth, only they are a bit less broken down. The collagen is a bit more broken down than the gelatin and so easier to digest from what I’ve read, I’m thinking there is something to that as I feel strongly good right after taking collagen while gelatin gives me only about half so much boost if that. I’m hoping bone broth will take it even further but only time will tell.

    Good information. I receive a lot of benefit from just using the gelatin though I have not experimented with collagen- gelatin contains the amino acids that the gut needs to rebuild. The idea is that the infections provoke an immune response which damages the lining of the gut leading to more inflammation.
     
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  13. overtheedge

    overtheedge Senior Member

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    Hey, I finished a 16 day course of xifaxan 3 days ago, didn't feel much of anything the first week of xifaxan but about 7 days ago I started feeling something like 80% improved and getting better by the day which has been phenomenal, the best time I've had since CFS hit me 4-5 years ago, I just don't want to relapse now that I'm here

    What all did you do to avoid relapse of sibo, were you taking the supplements you mentioned, glutamine/colostrum/high dose probiotics in those months right after the antibiotic? I read a lot of people online advocating the use of a prokinetic to prevent relapse, did you use anything like that? When you say you have been on a sibo diet is it purely low fodmap or is it something like SCD, GAPS, cedar sainai in addition?
     
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  14. ljimbo423

    ljimbo423 Senior Member

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    That's fantastic! :thumbsup:

    Yes, and I continue to take glutamine, high dose probiotics-50 billion, antimicrobial herbs like oil of oregano, thyme, olive leaf extract and holy basil- (very good to take at night to help with sleep!).

    My sibo is not gone yet though. I have had it for decades and it is very well entrenched in my gut. I just started to increase my dose of anti-microbials last week again.

    I had to cut back on them because the die-off from the bacteria (the lipolysaccharides getting into my bloodstream and causing an immune reaction) was causing flu-like flares that would last for days, putting me in bed for those days.

    I do take ginger, which is a prokinetic. I only take one a day though, with breakfast. I would take more but I get side effects from higher doses. Although I might try again. I think prokinetics could be very important.

    I was on a combination diet that consisted of both the low fodmap and scd for about 6 months-here is the diet. Then I started slowly adding in fodmaps and small amounts of starchy foods like potatoes and rice.

    I think diet is absolutely crucial to keep the overgrowth of bacteria from coming back. I would also suggest taking anti-microbial herbs with the low carb diet until you feel 100%. Just to be sure the sibo don't come back and you don't loose the great benefits you have gained.

    Congrats on the progress you have made! I think you have the right attitude though in wanting to do whatever you need to, to continue to heal and not loose the gains you have made. Thank you for sharing your experience, it's very inspiring! Makes me want to redouble my efforts!!:):thumbsup:

    Jim
     
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  15. mariovitali

    mariovitali Senior Member

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    I think that we should also consider the role of Bile Acids and of the Liver in this Thread :

    Why do we have Gut dysbiosis in the first place?

    Note : Xifaxan = Rifaximin


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3839982/
     

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